a human-centred concept to tackle the stigma of the
herpes simplex virus
Personal Research Project Stephanie Batliner Kingston University London, 2016/2017, K1640358 MA Communication Design and the Creative Economy Supervised by Janja Song
I declare that all materials in this dissertation that are not my own work have been acknowledged and that no materials from my previous degree(s) have been included. I have kept all materials used in this research, including samples, research data, preliminary analysis, notes and drafts, and I can produce them on request.
Abstract The objective of this research is to develop a human-centred concept to transform the negative image of herpes into an accepted conversation topic in our society. This study discusses the socially constructed stigma around the Herpes Simplex Virus (HSV). Herpes is a common but medically-ignored and culturally-stigmatised sexually transmitted infection (STI). The lack of understanding of the condition defines it as a taboo and fuels the shame, embarrassment and silence of those affected even though it is a health issue that involves three quarters of the population. Coping and dealing with a lifelong condition like herpes depends on effective self-management which is a challenging task especially for newly diagnosed people. Therefore, active communication is fundamental to help educate about the condition and resolve the misconceptions people have about it. The literature review includes topics on construction and maintenance of the stigma, designing for health and the different approaches for development of destigmatising strategies. Social and human-centred design (design thinking) today play a crucial factor in improving healthcare by offering new perspectives. The human-centred strategies to tackle the stigma could be adapted for sexually transmitted diseases (STDs). Deeper knowledge and understanding was gained by conducting four semi-structured interviews with a diverse group of people living with herpes. The six main findings deliver insights into the daily challenges of living with an STI. Common patterns and overlapping issues create starting points to recommend future action to raise awareness, provide personalised and peer support to reach acceptance around the condition. In addition, a practical storytelling approach was used to practice disclosure and find a suitable way to talk about this sensitive topic. Disclosure is a major aspect of preventing transmission and is a way to lessen mental health issues which results in better health. Concluding, four recommendations were presented and future research areas were suggested. This practical research project prepares for innovative and impactful approaches to eliminate the stigma through education and create an open dialogue around herpes. The researcher works towards the aim of establishing groundwork for an impactful social enterprise in order to create social change and this practical research project forms the basis of this ambition. Keywords: Herpes, stigma, destigmatising strategies, health, design thinking, social change
Acknowledgement This research has been particularly close to my heart due to my personal experience of living with genital herpes. A special thank you goes out to my supervisor Janja Song, who guided me with an open mind and gave me the courage to overcome my fears. Thank you to my parents, my sister Kerstin and my dear friend Tanweer, who supported me unconditionally. Most importantly, I thank the four participants who made an impact by openly sharing their experience. It would have been impossible without you. I am very proud to be part of the MACE family at Kingston University and I am grateful that I could learn in such a supportive, inspiring and creative environment.
Table of Content LIST OF FIGURES 07 LIST OF ABBREVIATIONS 10 1 INTRODUCTION 11 1.1 Context 11 Problem Statement 11 Target Audience 12 Outlook 12 1.2 Aims and Objectives 12 Empowerment 12 Communication 13 1.3 Research Questions 13 2 LITERATURE REVIEW 14 2.1 Designing for Health 14 2.2 The bad Image 14 2.3 The Consequences of the Stigma 16 Barrier for Treatment 17 Barrier for Disclosure 17 Bad mental Health 17 In the Way of Research 17 2.4 Maintenance of the Stigma 17 Isolation 17 Profit 18 Entertainment and Language 18 Medical Care 19 2.5 Destigmatising Strategies 20 2.6 Summary 26 3 METHODOLOGY 27 3.1 Methodological Approach 27 3.2 Research Overview 27 3.3 Data Collection Method 29 Phase 1: Interview 30 Phase 2: Practical Research 30 3.4 Research Sample 32 3.5 Analysis 33 3.6 Access Issues 33 3.7 Research Ethics 34 3.8 Summary 34
TABLE OF CONTENT
4 FINDINGS 35 4.1 First Finding 37 4.2 Second Finding 38 4.3 Third Finding 39 4.4 Fourth Finding 40 4.5 Fifth Finding 42 Stereotype 43 Differentiation and Naming 43 Status 44 4.6 Sixth Finding 44 4.7 Findings Practical Research 45 5 CONCLUSION AND RECOMMENDATIONS 46 5.1 Conclusion 46 5.2 Limitations 47 5.3 Recommendations and Implementation 47 Recommendation 1: Design Campaign to educate on Instagram 47 Recommendation 2: Tell a Friend 48 Recommendation 3: Prevention and Guidance through Video 48 Recommendation 4: Peer-to-peer Support 49 5.4 Future Research Projects 49 REFERENCES 50 BIBLIOGRAPHY 53 APPENDICES 57 Appendix 1: List of Products 58 Appendix 2: Example of an HSV Journey Map 59 Appendix 3: Interview Guide 60 Appendix 4: Interview Script 1 62 Appendix 5: Interview Script 2 66 Appendix 6: Interview Script 3 79 Appendix 7: Interview Script 4 92 Appendix 8: Instagram Hashtags and Influencer 101 Appendix 9: HSV Journalists and Media Contacts 103
TABLE OF CONTENT
List of Figures Figure 1 Batliner, S. (2017) Own representation of cover visual. Freepik (date unknown) Solidarity free icon from Flaticon. Available at: https://www.flaticon.com/free-icon/solidarity_282593 (Accessed: 29 August 2017) Figure 2 Batliner, S. (2017) Own representation of research questions. Freepik (date unknown) First aid kit free icon from Flaticon. Available at: https://www.flaticon.com/free-icon/ first-aid-kit_495789 (Accessed: 29 August 2017) Freepik (date unknown) Light bulb free icon from Flaticon. Available at: https://www.flaticon.com/free-icon/lightbulb_253657 (Accessed: 29 August 2017) Webalys Freebies (date unknown) Speech bubble free icon from Flaticon. Available at: https://www.flaticon.com/ free-icon/speech-bubble_86972 (Accessed: 29 August 2017) Eucalyp (date unknown) Brainstorm free icon from Flaticon. Available at: https://www.flaticon.com/free-icon/ brainstorm_181361 (Accessed: 29 August 2017) Freepik (date unknown) Teamwork free icon from Flaticon. Available at: https://www.flaticon.com/free-icon/ teamwork_477883 (Accessed: 29 August 2017) Zlatko Najdenovski (date unknown) Story free icon from Flaticon. Available at: https://www.flaticon.com/freeicon/story_188631 (Accessed: 29 August 2017) Freepik (date unknown) Stop free icon from Flaticon. Available at: https://www.flaticon.com/free-icon/stop_115591 (Accessed: 29 August 2017) Madebyoliver (date unknown) Megaphone free icon from Flaticon. Available at: https://www.flaticon.com/freeicon/megaphone_149197 (Accessed: 29 August 2017) Freepik (date unknown) Care free icon from Flaticon. Available at: https://www.flaticon.com/free-icon/ care_394369 (Accessed: 29 August 2017) Figure 3 Analog Memories (2016) Valtrex Television Commercial 2005. Available at: https://www.youtube.com/watch?v=rJ9pZjbh5Uc (Accessed: 1 August 2017) Figure 4 Just Add Water (2013) Valtrex - Doctor. Available at: https://www.youtube.com/watch?v=iXIxQgyjRB8 (Accessed: 1 August 2017) Figure 5 Michael, S. (date unknown) Durex Campaign. Available at: https://digitalsynopsis.com/advertising/creative-copywriting-headlines-inspiring-ads/ (Accessed: 1 August 2017) Figure 6 Beltrone, G. (2015) STD warnings look like infected flesh. Available at: www.adweek.com/creativity/congrats-omaha-you-now-have-countrys-most-disgusting-billboards-166007 (Accessed: 1 August 2017) Figure 7 Coupon, W. (1982) Time Magazine Herpes Cover. Available at: http://content.time.com/time/covers/0,16641,19820802,00.html (Accessed: 9 August 2017)
LIST OF FIGURES 7
Figure 8 Own representation based on Alexander, L. and Naisbett, B., (2002) Patient and physician partnerships in managing genital herpes. The Journal of infectious diseases, 186 (Supplement_1), p. 60. Freepik (date unknown) Team free icon from Flaticon. Available at: https://www.flaticon.com/free-icon/ team_476698 (Accessed: 29 August 2017) Freepik (date unknown) Doctor free icon from Flaticon. Available at: https://www.flaticon.com/free-icon/doctor_94858 (Accessed: 29 August 2017) Figure 9 Own representation based on Meisenbach, R.J. (2010) Stigma management communication: A theory and agenda for applied research on how individuals manage moments of stigmatized identity. Journal of Applied Communication Research, 38 (3), p. 277. Iconnice (date unknown) Next free icon from Flaticon. Available at: https://www.flaticon.com/free-icon/ next_131069 (Accessed: 29 August 2017) Figure 10aâ€“d Own representation based on Meisenbach, R.J. (2010) Stigma management communication: A theory and agenda for applied research on how individuals manage moments of stigmatized identity. Journal of Applied Communication Research, 38 (3), p. 278. Smashicons (date unknown) Checked free icon from Flaticon. Available at: https://www.flaticon.com/free-icon/ checked_149170 (Accessed: 29 August 2017) Revicon (date unknown) Stop free icon from Flaticon. Available at: https://www.flaticon.com/free-icon/ stop_101295 (Accessed: 29 August 2017) Becris (date unknown) Path free icon from Flaticon. Available at: https://www.flaticon.com/free-icon/path_349352 (Accessed: 29 August 2017) Zlatko Najdenovski (date unknown) Mortarboard free icon from Flaticon. Available at: https://www.flaticon.com/ free-icon/mortarboard_182327 (Accessed: 29 August 2017) Figure 11 Own representation based on d.school Stanford (date unknown) Design Thinking Process. Available at: https:// dschool-old.stanford.edu/sandbox/groups/designresources/wiki/36873/attachments/74b3d/ModeGuideBOOTCAMP2010L.pdf?sessionID=1b6a96f1e2a50a3b1b7c3f09e58c40a062d7d553 (Accessed: 18 August 2017) Madebyoliver (date unknown) Like free icon from Flaticon. Available at: https://www.flaticon.com/free-icon/ like_149219 (Accessed: 29 August 2017) Freepik (date unknown) Loupe free icon from Flaticon. Available at: https://www.flaticon.com/free-icon/ loupe_109859 (Accessed: 29 August 2017) Puppets (date unknown) Light bulb free icon from Flaticon. Available at: https://www.flaticon.com/free-icon/ light-bulb_68587 (Accessed: 29 August 2017) Madebyoliver (date unknown) Tools free icon from Flaticon. Available at: https://www.flaticon.com/free-icon/ tools_248147 (Accessed: 29 August 2017) Freepik (date unknown) Flasks free icon from Flaticon. Available at: https://www.flaticon.com/free-icon/ flasks_112731 (Accessed: 29 August 2017) Figure 12 Batliner, S. (2017) Own representation of an example of mapping an HSV acceptance journey. Figure 13 Batliner, S. (2017) Own representation of Interview Structure.
LIST OF FIGURES 8
Freepik (date unknown) Attractive free icon from Flaticon. Available at: https://www.flaticon.com/free-icon/attractive_272422 (Accessed: 29 August 2017) Freepik (date unknown) Mountain free icon from Flaticon. Available at: https://www.flaticon.com/free-icon/ mountain_301361 (Accessed: 29 August 2017) Freepik (date unknown) Hiker free icon from Flaticon. Available at: https://www.flaticon.com/free-icon/hiker_333605 (Accessed: 29 August 2017) Figure 14 Batliner, S. (2017) Own representation of the Storytelling Learning Process. Figure 15 Batliner, S. (2017) Own representation of personas. Iconnice (date unknown) Woman free icon from Flaticon. Available at: https://www.flaticon.com/free-icon/woman_131039 (Accessed: 29 August 2017) Iconnice (date unknown) Man free icon from Flaticon. Available at: https://www.flaticon.com/free-icon/ man_131040 (Accessed: 29 August 2017) Figure 16 Batliner, S. (2017) Own representation of access to the herpes community. Freepik (date unknown) Shared folder free icon from Flaticon. Available at: https://www.flaticon.com/free-icon/ shared-folder_115794 (Accessed: 29 August 2017) Freepik (date unknown) Warning free icon from Flaticon. Available at: https://www.flaticon.com/free-icon/warning_505534 (Accessed: 29 August 2017) Madebyoliver (date unknown) Success free icon from Flaticon. Available at: https://www.flaticon.com/free-icon/ success_149148 (Accessed: 29 August 2017) Madebyoliver (date unknown) Hourglass free icon from Flaticon. Available at: https://www.flaticon.com/freeicon/hourglass_149236 (Accessed: 29 August 2017) Figure 17 Own representation of acceptance stages partly based on Sperle, U. (2011) Leben mit Herpes Genitalis. German Edition. novum publishing gmbh. Madebyoliver (date unknown) Stopwatch free icon from Flaticon. Available at: https://www.flaticon.com/freeicon/stopwatch_149322 (Accessed: 29 August 2017) Freepik (date unknown) Blood free icon from Flaticon. Available at: https://www.flaticon.com/free-icon/ blood_484722 (Accessed: 29 August 2017) Madebyoliver (date unknown) Placeholder free icon from Flaticon. Available at: https://www.flaticon.com/freeicon/placeholder_149226 (Accessed: 29 August 2017) Figure 18 Batliner, S. (2017) Own representation of map of emotions. Figure 19aâ€“c Instagram (2017) Account of Lauren Wasser. Available at: https://www.instagram.com/theimpossiblemuse (Accessed: 29 August 2017) Instagram (2017) Account of Madeline Stuart. Available at: https://www.instagram.com/madelinesmodelling_ (Accessed: 29 August 2017)
LIST OF FIGURES 9
Instagram (2017) Account of Lets Talk About Mental Health by Jessica Walsh. Available at: https://www.instagram. com/letstalkaboutmentalhealth (Accessed: 29 August 2017) Figure 20 Own representation based on Insights, B. (2014) EAST: Four Simple Ways to Apply Behavioural Insights. London: Behavioural Insights. Freepik (date unknown) Target free icon from Flaticon. Available at: https://www.flaticon.com/free-icon/target_182146 (Accessed: 29 August 2017) Freepik (date unknown) Medal free icon from Flaticon. Available at: https://www.flaticon.com/free-icon/medal_387520 (Accessed: 29 August 2017) Smashicons (date unknown) Alarm clock free icon from Flaticon. Available at: https://www.flaticon.com/free-icon/ alarm-clock_149315 (Accessed: 29 August 2017) Smashicons (date unknown) Network free icon from Flaticon. Available at: https://www.flaticon.com/free-icon/ network_149181 (Accessed: 29 August 2017)
List of Abbreviations HSV STI STD HIV SMC
Herpes Simplex Virus Sexually Transmitted Infection Sexually Transmitted Disease Human Immunodeficiency Virus Stigma Management Communication
LIST OF ABBREVIATIONS 10
1 Introduction 75% of the world population carry the Herpes Simplex Virus (HSV) either knowingly or unknowingly (Scott, 2015). Herpes belongs to the group of sexually transmitted infections (STIs) and, even though it is fairly common, the stigma around it is still powerful (Merin and Pachankis, 2011). It is deeply rooted in cultural perceptions of immoral sexual behaviour and these perceptions are supported by a dysfunctional education system and misconceptions. The purpose of this study is to create space for an open dialogue to accept herpes as a regular skin condition in society. This research uses tools for social change of the creative industries to identify a destigmatising strategy for herpes.
1.1 Context The creative industries contain the knowledge, resources and power to create value by tackling social taboos. As Morley (date unknown) states, As with many taboos, design is a collective language which offers a way a key part of the embarrassment to inform, educate and influence. Design plays a is simply not having crucial role in society by creating a positive reality the right words to discuss it. that has been forgotten due to the influence of IDEO, 2010 corporate and commercial aspects (Morley, date unknown). It is relevant to destigmatise people, encourage social transformations and ensure a positive culture and a healthy environment. Social taboos and sensitive issues like mental health or death can be the strong starting points for innovative products (IDEO, 2010). By opening up a broader horizon stigmatised people can be integrated into society and the need to hide can be resolved.
Problem Statement Herpes is one of the most common STIs worldwide (Merin and Pachankis, 2011), but remains shrouded in silence and ignorance. As Merin and Pachankis (2011) state, people are usually less fearful of HSV and more concerned about being affected by the stigma. The consequences of the stigma can lead to major life changing situations. HSV can influence the health on a physical level (e.g. weaken the immune system) and psychological level (e.g. rise in anxiety). It is connected to our body, soul, culture and relationships. The virus makes the body more susceptible to other infections like HIV. The chances to becoming infected are six times higher. Many people suffer mental health issues due to the stigmatisation, which in some cases leads to suicide. Talking about taboo issues like HSV can make the condition less powerful and reduce transmission (Merin and Pachankis, 2011).
Target Audience Standing up to a taboo issue requires courage and strength; this research is intended to support people living with herpes to take a step forward in a safe environment. It will give them the opportunity to reflect on their journey and become an educator within the community. This approach of empowerment can lead to more control over the medical condition. If people are able to accept herpes as a normal part of their lives, they can tackle the stigma from the core and influence the opinion of society. Not every individual has the same social, cultural, environmental preconditions. Therefore, the research will focus on Western culture due to the researcherâ€™s heritage and knowledge.
Outlook The contemporary society is driven by high-speed technology which navigates our relationships and community. The interdependence influences the intolerance of human mistakes and the lack of close connections can create an unintentional distance between people. The vicious circle of silence, ignorance and shame is ongoing and results in more transmission and spreading of herpes and other STIs. As Merin and Pachankis (2011) state, it is a balancing act to communicate a destigmatising message in an effective way, but it can free people to seek appropriate treatment. Reducing the stigma is necessary in order to prevent mental health issues, more frequent outbreaks and transmission. There is limited literature about design and communication for taboo issues as well as destigmatising strategies, even though this is a big part of many peopleâ€™s life. This practical research project provides a concept for an impactful social enterprise which aims to break the silence and open up the communication around taboo issues. The researcher wants to demonstrate the influence of the creative industries to encourage social change and inspire creatives to use their skills in a meaningful way.
1.2 Aims and Objectives The main goal of this research is to create space for an open dialogue to accept herpes as a regular skin condition in society. In order to resolve the taboo and stigma of herpes there are two objectives which support this vision.
Empowerment The objective is to empower people living with herpes by helping them to understand all aspects of the condition which allows transformation to a positive kind of life approach and responsible handling. Therefore, raising awareness and building trust in the herpes community plays an essential role. It is a big task to show people dealing with herpes the advantages of speaking out and disclose in order to create acceptance in society. As role models, they can have a real impact as educators and through empowering themselves they can decrease their mental pain.
Communication Speaking about herpes in social environments is a way to break the ignorance and create acceptance. People living with herpes can integrate herpes in daily conversations with friends. This shows the human aspects of the condition. Starting by targeting close friends provides a safe environment to open up. Making herpes an accepted subject in society will lead to better health, more awareness of someoneâ€™s needs and more prevention. This goes hand in hand with improved healthcare and sex education.
1.3 Research Questions The research was guided by the following questions (Figure 2) to discern ways of empowering people and creating an open dialogue around herpes.
future of healthcare
+ Primary Research
interviews to identify the needs
practical storytelling to improve disclosing
= Research Questions
Q1: How can we talk about herpes to educate ourselves and others? Q2: How can it be more acceptable to disclose and discuss? Q3: Which obstacles dominate the journey of acceptance?
= Research Objectives
open communication about hsv
resolve the taboo
Figure 2: Research questions (Batliner, 2017).
2 Literature Review This chapter will discuss the relevant literature about healthcare, designing for the future, the origin of the herpes stigma and destigmatising strategies. Due to the lack of academic or medical studies on HSV, some valid online sources are taken into consideration as well as studies about HIV to challenge these assumptions. Lichtenstein (2003) confirms that literature focuses more on stigma related to HIV rather than other STIs.
2.1 Designing for Health There are many open questions around the future of healthcare and, with these immense challenges, design becomes a relevant driver for problem-solving on a bigger … well-designed scale (Hanser, 2009). The aim of this research is to create healthcare experience groundwork for a concept which empowers people living empowers everyone. with herpes and helps to communicate openly in a social Dana Cho, IDEO, date unknown environment in order to create acceptance for STDs like herpes in our society. Personalisation and peer support are some of the keywords surrounding the future of health. Peer support has huge potential to shift behaviour, wellbeing and health services. Graham and Rutherford (2016) confirm a positive impact of peer support for people with long-term conditions. Health can be a very sensitive and intimate aspect of our lives (Terry, 2017). People depend on their health which adds even more reason to get involved. This is the gap where design thinking can provide solutions that create change and impact. This technique can offer new ways of thinking through including the target audience from the very beginning and iterate the solutions as long as necessary (d.school Stanford, date unknown). It is also an approach that reduces resistance to a minimum since people are involved, their needs are the basis and they are part of the solution.
2.2 The bad Image Herpes was not always regarded in a bad light; years ago it was seen as a regular condition and there was no special attention given to it. According to Scott (2015), the first antiviral drug was developed in the 1970s but did not sell due to a lack of demand. In response, the drug industry used an aggressive marketing strategy called “disease-mongering” to generate fear and increase sales. The pharma industry suggested a solution to resolve the fear which was introduced by them in the first place. This “worry resolution” approach (Lockton, Harrison and Stanton, 2010) influenced social behaviour and has caused fatal consequences for people living with herpes. The successful marketing spread the message, leading to promotion through sponsored support groups. The term “incurable” is one of the triggers and is responsible for continuing to perpetuate the stigma (Scott, 2015). Cuatrecasas (2006) was involved in the development of an antiviral and confirms that “genital herpes” was an unknown term before marketing promoted it.
LITERATURE REVIEW 14
In addition, a differentiation between the types has occurred. Distinguish… nearly all… had similar early ing meant also labelling the types into histories of major disinterest “good” and “bad” which lead to major and scepticism from the issues (Project Accept, date unknown). commercial side, usually due Oral herpes which is also known as cold to misunderstanding of the sores, is referred to as the “good” herpes marketing potential or medical need. because it was not connected to sex. Cuatrecasas, 2006, p. 2839 Genital herpes is the “bad” type due to moral issues around sex. These labels still exist today. Spreading this understanding made people living with oral herpes believe that they did not need the antivirals because it is the “good” type. The pharma industry recommended the antivirals only for genital herpes. As a result, people with oral herpes spread it because they did not take any precautions. Through oral sex it is possible to transmit oral herpes to the genitals. The pharmaceutical companies claimed to help but behind closed doors the strategy was to accelerate the spreading in order to sell more drugs. Antiviral commercials in 2005 and 2006 for Valtrex (Figure 3 and 4) refer to genital herpes and leave oral herpes unaddressed (Gee, 2013). This might constitute proof that the misinformation is communicated by the pharma industry. Even years later, health campaigns that talk about herpes are rare and the ones that exist never show herpes in the full context. The Durex Campaign (Figure 5) created by Michael (date unknown) is simple, straight to the point and raises the awareness of safer sex. Herpes is mentioned among other STDs. The STD warning campaign (Figure 6) uses infected skin to elicit revulsion from the target audience (Beltrone, 2015). This provocative campaign increases the stigma of herpes as the approach adds to the image of describing herpes as disgusting.
Figure 3 and 4: Valtrex Television Commercials (Analog Memories, 2016 / Just Add Water, 2013).
LITERATURE REVIEW 15
The cover story (Figure 7) of Time magazine in 1982, “The New Scarlet Letter – Herpes, an Incurable Virus Threatens to Undo the Sexual Revolution”, also had a major impact on the bad image (Potiker, 2016). Most people are able to deal with the symptoms but they struggle to overcome the stigma. Nowadays, HSV is next to HIV one of the most stigmatised medical conditions (Scott, 2015). With the headline “How Our Fear of Herpes Was Invented by a Drug Company” McNamara (2016) comes straight to the point: “More stigma, more profit.” Magazines like Teen Vogue (McNamara, 2016) and Broadly Vice (Potiker, 2016) seek to reach young women in particular and are fighting hard to clarify where the fear comes from and how the stigma is a result of it.
2.3 The Consequences of the Stigma The stigma of genital herpes can cause psychological distress and the consequences are enormous. Studies have proven that the combination of psychological distress and poor coping skills can lead to more frequent outbreaks (Merin and Pachankis, 2011). The stigma is constructed by society and this interpretation of it is a major factor of the response to a genital herpes diagnosis (Bickford, Barton and Mandalia, 2007).
Figure 5: Design Campaign Durex (Michael, date unknown).
Figure 6: Design Campaign STD warnings (Beltrone, 2015).
Figure 7: Cover of Time magazine (Coupon, 1982).
LITERATURE REVIEW 16
Barrier for Treatment According to Lichtenstein (2003) stigma and shame are major obstacle for medical treatment. Privacy, visibility, confidentiality and gossip are some of the fears that delay or hinder treatment. Furthermore, there was a higher change that medical staff with a conservative attitude would see patients with sexually transmitted infections in a negative light (Lichtenstein, 2003). Foster and Byers (2008) confirm these findings and add this negative perception was even stronger when the patient did not feel any shame or embarrassment.
Barrier for Disclosure Merin and Pachankis (2011) ascertained that the reason why many people are anxious to disclose their sexual status is the fear of being defined by the stigma and losing their identity. According to Woods (2014), genital herpes is defined as a conversational taboo; since it is invisible from the outside many people fight a hidden battle. In addition, people are more likely to open up to a long-term sexual partner rather than to someone they have casual sex with or a one night stand (Bickford, Barton and Mandalia, 2007). The decision to talk about it is affected by the anticipated reaction of the sexual partner.
Bad mental Health According to Bickford, Barton and Mandalia (2007), the likelihood of suffering from mild to severe anxiety is twice as high for people dealing with genital herpes. As (Greene, 2017) explains: “When it comes to sex, women are forced to endure a sexual double standard that views them as either ‘virgins’ or ‘whores’.” A diagnosis can have a massive effect on mental and emotional health, decreasing self-esteem and self-confidence through shaming.
In the Way of Research The existing stigma may be one of the reasons why there is not a lot of literature available. The fear of being connected to herpes is an obstacle for many to be part of a medical trial or participate in research (The Helper, date unknown).
2.4 Maintenance of the Stigma Besides the origin of the stigma and the consequences, it is even more relevant to look at the factors that fuel this perception and keep the stigma alive.
Isolation According to Miller’s (date unknown) research herpes communities play a contradictory role. On one hand, they offer support but, on the other hand, they unintentionally reinforce the stigma by creating isolation. The distance between people living with herpes finding a place to hide in the support groups and the society can have a dramatic impact on the efforts to eliminate the stigma. There are many valid points to argue for and against herpes support groups. Nonetheless, their success in creating a safety net for especially newly
LITERATURE REVIEW 17
diagnosed people cannot be denied or underestimated. In conclusion, it is a matter of balance between seeking help in the support groups and reintegrating into society (Miller, date unknown). Actual discussions from advocates living with herpes support this point of view (De la Cretaz, 2016). As Dawson (2016, cited in De la Cretaz, 2016), a social activist and a respected personality in the fight to eliminate the ignorance around STIs, states: “Stigma scares us into feeling isolated, and then that isolation reinforces the stigma.”
Profit From a commercial perspective, the stigma around herpes has created many opportunities to generate profit (Moynihan, Heath and Henry, 2002). Dating websites for people living with herpes or any other STD benefit from the stigma. As Dawson (2016a) highlights: “Creating a dating app only for people with herpes feeds into the prejudice that people with STIs shouldn’t date people without STIs. They reinforce the impulse of scared, raw people to hate themselves and hide from the rest of the world. You cannot say your service fights STI stigma when it relies on stigma to exist.” Newly diagnosed people are usually in a vulnerable position which makes them easy targets for cure, treatment, or other scams. The FDA (2011) has published a list of fraudulent STD products (Appendix 1) to raise awareness of their misleading claim to treat STDs or prevent transmissions. These health fraud products are one of the main concerns of the FDA since they can cause harm to patients or delay appropriate treatment.
Entertainment and Language In addition, herpes is an easy target for jokes since it is a lifelong infection and is associated with sexual promiscuity or immoral behaviour. This position distinguishes herpes from other STDs, which are usually curable, or like HIV, which is too serious to laugh about. Contracting herpes is considered self-caused (Fortenbury, 2014). The representation of herpes in the media as well as the unsuitable language exacerbate the stigma. The strong fear has led to the use of secret codes and definitions. 437737 are secret digits used by people with herpes on dating websites to send a signal to other people with herpes. The label “H” is used in herpes communities and could be a modified form of the Scarlet H. Using secret language to talk about herpes makes it almost inexpressible otherwise and supports the silence (Miller, date unknown). Words like “infected” or “suffering” can have a negative association. The usage and context can make a huge difference (Dawson, 2016b). The term “gift” as a reference for herpes is a double-edged sword. On one hand, describing herpes as a “gift” is connected with the desire to transform the diagnosis into a positive life changing situation (Dawson, 2016c). On the other hand, the agreement to have sexual intercourse with someone does exclude receiving a lifelong virus. This aspect is even more essential if the person who spreads the virus is called a “gifter”. As mentioned by Dawson (2016c) using this term can trivialise an emotionally abusive act.
LITERATURE REVIEW 18
Medical Care Herpes is not severe enough in comparison to life threatening illnesses that it has relevance for medical professional. As Alexander and Naisbett (2002) state, there is a low degree of awareness (Figure 8) that a diagnosis not only has physical consequences but could also influence the mental health of a patient. Medical professionals focus on the physical aspects and forget to include empathy, which can be interpreted as apportionment of blame and fuels the stigma. Removing the human aspect in this situation makes the day of the diagnosis for many people unforgettable and confronts them with the stigma during an extremely vulnerable time (Alexander and Naisbett, 2002). Health care professionals play a key role when the patient receives the diagnosis. The remaining challenge for healthcare workers is to improve their skills for empathetic communication and be prepared for an emotional response from their patients (Foley and Patel, 2001).
patients VS physicians
... feel shame, embarrassment, stigma, anxiety, anger, shock, guilt, depression
... see herpes as a trivial disease, easy to manage, no psychologic impact
... want accurate diagnosis, therapy to eliminate outbreaks
... consider cost and severity of disease primarily
... want therapy to prevent transmission
... do not see transmission as a major concern (safer sex and condoms)
... prefer suppressive therapy, specially if once daily
... often do not treat patients, offering supportive care only
... want information on disease, impact on lifestyle, drug therapy options
... restrict suppressive therapy to those with more than six attacks per year
... want effective patient-physician partnership to enable self-management
... do not think counseling and information is necessary, not offered routinely
Figure 8: Own representation based on predominant patient and physician views about genital herpes and its management (Alexander and Naisbett, 2002).
LITERATURE REVIEW 19
2.5 Destigmatising Strategies Many people face stigmatisation daily. Nonetheless the research does not provide help to individuals. Understanding the complexity of a stigma and the framework (Figure 9) is essential. There are gaps in the stigma research. Goffman (2009) defines stigma as a permanent label or mark on someone that questions their moral status. The types can be physical, social and moral.
Label Mark Responsibility Peril
Physical, social, moral and discredited, discreditable
Potentially stigmatised individualâ€™s attitude toward: Publicâ€™s stigma belief applicability of stigma to self
Stigma Management Communication Strategies Accepting, avoiding, evading responsibility, reducing offensiveness, denying, ignoring or displaying
Outcomes and Consequences e.g. health, achievement, self-esteem, job turnover Figure 9: Own representation based on Model of Stigma Management Communication (Meisenbach, 2010).
LITERATURE REVIEW 20
The consequences of bad stigma management can include prejudice, discrimination, depreciated social identity, or feeling of inferiority. According to Smith (2007), the impact depends on the reaction to the stigma. Smithâ€™s concept is based on the fact that the stigmatised person accepts the stigmatisation, which excludes all possibilities of a proactive and advocating roles. Meisenbach (2010) emphasises that the perception of a stigma can differ between the stigmatised and stigmatiser. A stigma can be constructed and shifted by both. It is relevant if the public shares the same stigma perception as the stigmatised individual or not. In the existing research it is unclear who decides if someone is stigmatised (Meisenbach, 2010). Stigma is exposed, managed and kept alive through communication, especially talk. Meisenbach (2010) states that since a stigma is usually connected to a permanent physical condition or unchangeable fact (e.g. herpes positive), it is seen as more constant than changing. However, if a stigma is defined by someoneâ€™s perception as well as the communication, it has a more flexible and changing existence. For example, the image of breast cancer has been changed and transformed into a more positive view. According to Meisenbach (2010), stigmas can be transitory. The research shows that due to certain conditions the disclosure can be involuntary. It is essential if the individual accepts or denies the publicâ€™s point of view, as well as the application of the stigma to that person. The proposed SMC strategies depend on the perception of an individual and can differ from person to person. Depending on their understanding of the stigma, it can be split into four approaches: 1. Accepting (Figure 10a) 2. Avoiding (Figure 10b) 3. Evading responsibility / 4. Reducing offensiveness (Figure 10c) 5. Denying / 6. Ignoring and displaying (Figure 10d) A comparison with existing herpes literature suggested to focus on certain categories. The below-listed strategies (10a) are used if an individual accepts the existence of the stigma and that accurately applies to them.
LITERATURE REVIEW 21
Passive acceptance involves a stigmatising situation without any agreeing or disagreeing reaction (Meisenbach, 2010). Not reacting to herpes jokes means passively accepting the stigma (Fortenbury, 2014). Display stigma means that the expected and stigmatised behaviour will be practiced (Meisenbach, 2010). Herpes is connected to immoral sexual behaviour like sleeping around or cheating (Greene, 2017). Apologise is an approach that admits to wrongdoing. Some people might feel that herpes is a curse for bad behaviour. Isolate self is a coping method and is usually the case if there are feelings of blame and shame. Bond with stigmatised includes isolation as well as connecting with other stigmatised people. Many people who are living with herpes dedicate their whole social life exclusively to the herpes community (Miller, date unknown).
Figure 10a: Own representation of Stigma Management Communication Strategy: Accepting (Meisenbach, 2010).
LITERATURE REVIEW 22
By contrast, the avoidance strategy (Figure 10b) questions if the stigma holds true to the individual (Meisenbach, 2010). Hide stigma attribute can relate to someone who uses “cold sores” to describe herpes even though both are caused by the same virus (Potiker, 2016). Avoid stigmatising situations can be the case if someone living with herpes does not want to go to the doctor and avoids medical treatment (Lichtenstein, 2003). Stop stigma behaviour refers to someone with herpes who is associated with sleeping around and stops having sex in order to cut the cord. The core aspect of the example above is the individual’s disconnection from the stigma rather than the aim to shift society’s viewpoint. In addition, there is an approach (10c) which admits the personal connection to the stigma but fights to change the opinion of society (Meisenbach, 2010).
Figure 10b: Own representation of Stigma Management Communication Strategy: Avoiding (Meisenbach, 2010).
LITERATURE REVIEW 23
Unintentional means that the marked person gives an account for the characteristic which is labelled. For example, someone living with herpes argues that they always had safe sex. Minimisation is used to prove that the stigma attribute does not harm anyone. In the case of herpes, hiding the condition can be more harmful than actually living with it. Transcendence is a strategy to transform the stigma into a bigger purpose in life (Meisenbach, 2010). This could be the case with people living with herpes who emphasise the fact that they choose their sex partners more carefully, live healthier or educate people. This transformation can create new value which can lead to more respect and honour. Finally, there is a strategy denying (10d) which does not acknowledge being affected by the stigma personally and it challenges the public understanding. This method is basically social activism and a technique to educate the society. Therefore, these strategies are more likely to be used by people who are advocating and want to re-educate the society (Meisenbach, 2010).
Figure 10c: Own representation of Stigma Management Communication Strategies: Evading responsibility and reducing offensiveness (Meisenbach, 2010).
LITERATURE REVIEW 24
Simple denial means that individuals are convinced that the stigma is non-existent. Logical denial refers to individuals who are sceptical about the supporter and communicator of the stigma. The stigma around herpes did not exist until the pharma industry created it in order to sell their new antiviral drug (Scott, 2015). Displaying is a way to handle stigma communication by not getting involved as an approach to challenge the perspective. If someone discloses their herpes status to a non-stigmatised individual, this can influence the perception of the stigma positively.
Figure 10d: Own representation of Stigma Management Communication Strategies: Denying and ignoring (Meisenbach, 2010).
LITERATURE REVIEW 25
2.6 Summary It cannot be stressed enough on how destructive the influence of the stigma is for people living with herpes. It influences the quality of many people’s lives, which can lead from a “harmless” STI like HSV to major mental health issues, discrimination and in some cases, even suicide. In general, little literature could be found about design and communication related to resolving taboo issues. This indicates that there is a gap which can be filled by this research. Furthermore, there are no findings available to provide a practical solution for individuals living with herpes who want to free themselves from the stigma. With a lifetime condition like HSV, it is essential to self-manage the condition, its side effects and find ways to adapt and deal with the new health situation.
LITERATURE REVIEW 26
3 Methodology This chapter introduces a qualitative approach to achieve the goal of this research project.
3.1 Methodological Approach The journey of HSV starts with prevention. From a theoretical perspective, this means that the communication of herpes would need to be part of the sexual health education for teenagers. Due to the sensitivity of the topic, legal issues and the limited time, the work and engagement with young people, however, is not feasible. Instead, the research will focus on people living with herpes. Nonetheless, once the communication strategy works, integrating it in educational work and helping recently diagnosed people is the future vision. The qualitative method was chosen to obtain information about feelings and perceptions. This approach provides a better understanding of the full context and allows to uncover influences which led to behaviour changes.
3.2 Research Overview The framework of the primary research is based on the design thinking process (d.school Stanford, date unknown). This approach (Figure 11) was used to collect feedback and iterate as many times as necessary to create the most accepting and impactful outcome.
Empathise Learn as much as possible about the audience.
Define Create a point of view based on insights.
Ideate Come up with as many different solutions as possible.
Prototype Building a representation of one or more ideas.
Test Sharing of the prototyped solution with the audience. Figure 11: Own representation based on d.school Stanford (date unknown).
Empathise Firstly, the researcher documented the experience of dealing with herpes through mapping the acceptance journey (Figure 12) which included major events and the connected feelings and questions (Appendix 2). Secondly, the literature created the basis for the research. It helped to understand the environment and define the influences of the stigma around herpes. Thirdly, through the collection of interviews the researcher could empathise with the target audience and detect valuable insights.
Define By conducting interviews, enough depth insights were gathered to define the problems which surround the skin condition and make herpes a burden to live with.
Ideate Ideas for different ways to tell the story were created. How can others feel inspired and empowered through my story?
Prototype Video was used as a medium to prototype and the findings were documente on a website.
Test The video was shared in order to get feedback and iterate.
Figure 12: An example of mapping an HSV acceptance journey (Batliner, 2017).
3.3 Data Collection Method The data was collected through semi-structured interviews followed by feedback from the target audience and the public. The experience with potential research participants has shown difficulties, as outlined below. Therefore a semi-structured approach (Figure 13) allowed enough freedom for the interviewee a direct confrontation with intimate and uncomfortable questions could be avoided in order to reduce the risk of a withdrawal. In the second stage, it was necessary to use a practical approach to solve the problem of language and communication around herpes. Storytelling was used to encourage people living with herpes to educate themselves and others. Therefore the learning process was documented on a website which allows other people to work on their own storytelling to break the silence and improve the representation of herpes.
Figure 13: Interview Structure (Batliner, 2017).
Phase 1: Interview The researcher shared her own connection to herpes as well as the research purpose in online support groups and platforms. Receiving the approval to spread the message and recruit people for interviews was the main obstacle with this method. The reactions to post about the research were overwhelmingly positive; nonetheless, there was hesitation on the part of the target audience. Even though the research has been part of the herpes community for two years, gaining trust from others and motivating them to share their personal story for research purposes was an enormous challenge. In total, 17 volunteers were willing to participate in the research, but only 4 went through with it. After agreeing to participate, 11 people never responded to the detailed study information which was sent by email. 2 participants scheduled an interview, cancelled with the reassurance to reschedule but never did. The researcher responded to this situation by offering a written interview to the 2 participants who did not reschedule. One of the two participants mentioned that she has been living with herpes for 26 years and still cannot accept it. This case would have added a whole new perspective to this research and may have had an impact on the outcome. 4 volunteers were willing to share their experience of living with herpes in a semi-structured interview. The looser structure allowed the interviewees to tell the story in their own way and in a natural way (Collins, 2010). The interview guide (Appendix 3) was created to prepare the interviewee for the conversation and inform them about the study. The researcher shared her own experience to create a safe environment. The interviews were conducted via video call and were voice recorded. Due to time differences, the researcher had to stay flexible with interview times that were offered. Every participant signed a consent form, either manually or digitally, and agreed to the terms. The consent form was an indispensable part of the research, even though it could have represented an obstacle (Bryman and Bell, 2015). Former research has shown that most people living with herpes avoid any possibility of being connected to it (The Helper, date unknown).
Phase 2: Practical Research Through the support of the online course â€œStorytelling for Influenceâ€? (IDEO U, 2017) the researcher created a storyline and recorded a video. To ensure the accessibility the whole process was documented on a website (Figure 14): http://eliminatethestigma.tilda.ws/. This second phase was necessary in order to create a practical experience rather than a theoretical concept. The video was shared in order to generate feedback and iterate. Talking about herpes and record it was a challenging task. During this process the researcher created a basis to develop the story further and polish the details. This experiment showcases an example for others to follow. The documented learnings can be used by other people living with an STD to share their own story and to improve their confidence to disclose.
Figure 14: Storytelling Learning Process on http://eliminatethestigma.tilda.ws/ (Batliner, 2017).
3.4 Research Sample Judgement sampling was used as a sampling method. The requirements were that the participant is living with herpes and is over 18-years-old. Due to the sensitivity of the topic and the associated difficulties as explain in paragraph 3.3, the sampling was not restricted through additional criteria. The sample was as large as possible due to the given circumstances related to access and trust issues (Collins, 2010). Through an increase of the sample, a valid generalisation would be feasible. The sample included four participants (Figure 15) with the following background information. Sexual orientation and religious beliefs were not taken into consideration.
Gender Female Continent North America Ethnicity Black or African American Age 26
Gender Female Continent Australia Ethnicity White/Caucasian Age 25
Living with herpes 7 years Type of herpes HSV-2 Location of outbreaks Genitals
Living with herpes 2 months Type of herpes HSV-1 Location of outbreaks Genitals
Gender Female Continent North America Ethnicity White/Caucasian Age 50
Gender Male Continent United Kingdom Ethnicity White/Caucasian Age 26
Living with herpes 40 years (aware 3) Type of herpes HSV-1 Location of outbreaks Oral
Living with herpes 2 years Type of herpes Unknown Location of outbreaks Genitals
Figure 15: Personas of the four conducted interviews see appendices 4â€“7 for details (Batliner, 2017).
3.5 Analysis The qualitative data (Appendices 4–7) was analysed using the three following steps (Bryman and Bell, 2015): data reduction, displaying data, followed by conclusions and validity. The first step of the data analysis was transcribing the recorded interviews verbatim. The approach of open coding was used to cluster and summarise the content of each transcript. As explained by Bryman and Bell (2015), interviews are only valid in connection to other interviews. By comparing different stories, common elements, struggles and extreme situations can be evaluated. Afterwards, the summarised content was processed further through axial coding. Common elements, overlaps and connections were used to concretise the clusters. Lastly, the approach of selective coding was applied to prioritise the data depending on relevance and mention.
3.6 Access Issues Gaining access (Figure 16) to the herpes community was difficult, even though the researcher is part of many support groups. The majority of groups and platforms are secret and sceptical about research issues. Building trust within these communities as well as coordinating and receiving the approval from the administrator to inform the members about the research was almost a project on its own. Unfortunately, the access rights to a platform with 61’000 members was granted only towards the end of the research and there was no possibility to use this opportunity anymore.
access to 8’542 people denied
access to 2’630 people approved
72’238 members requested support groups, communities, platforms
access to 61’066 people approved too late
Figure 16: Access herpes community (Batliner, 2017).
3.7 Research Ethics Interviewing people diagnosed with an STI raised critical concerns about ethical aspects due to its sensitivity in our society. The area of emotional harm was considered in particular (Bryman and Bell, 2015). Ethical considerations were made before hand in order to create a framework in an ethical manner. An interview consent form and study information sheet were sent out to all participants to ensure they were aware of the content as well as terms and conditions (Appendix 3). The interview consent form was based on a template published by Bryman and Bell (2015). The necessary aspects about which information could be published were added to the template. Every participant signed and returned the consent form before the interview. The privacy of every participant was respected at all times. Sharing the researcherâ€™s HSV journey was essential to create a safe environment of trust and open communication. The data collection was confidential and the research outcomes were published in a way that no one would be identifiable. The collected data were only used within this study and will be retained digitally on a password protected usb stick for the next ten years.
3.8 Summary Qualitative research was the chosen method for this study and is described in detail above. The decision to pursue a qualitative approach was based on the intent to gain knowledge about perceptions, personal values and experiences, as described in detail above. The data collection was carried out through semi-structured interviews and soliciting feedback from the target audience and the public. Both methods were applied to gain personal insights from the audience. The sample included four participants and fulfilled the demanded requirements. The analysis of the interviews included open, axial and selective coding. The restrictions related to the chosen method were mentioned in detail. The website http://eliminatethestigma.tilda.ws/ showcases a practical example. The constructive feedback which was collected and taken into consideration to iterate the video and improve the storytelling created a deeper understanding. This experiment led to additional learnings and offers a space for others to improve their confidence and practice to include herpes in their daily conversations. It is a practical way to educate themselves and others.
4 Findings The goal of the deep insight interviews was to document diverse experiences from people living with herpes on their way to acceptance. Each journey was visualised (Figure 17) on a map in order to support the analysis. The steps start with denial linked to the diagnosis and end with acceptance which sometimes leads to advocacy. The order of these steps is only a suggestion since the steps and the connected feelings can happen at any time of the healing process. Difficulties on the way may suggest where and in which form support is needed. This is an overview of the key findings (Chapter 4.1 to 4.6) from the conducted interviews: First Finding Sex education does not prepare one for a life with a sexually transmitted disease (STD) Second Finding The way herpes is contracted could have a major impact on coping Third Finding Medication can provide reassurance or be a reminder of a health issue Fourth Finding The feeling of losing control is a large part of the experience, especially for newly diagnosed people Fifth Finding HSV negative as well as HSV positive people who believe the common misconceptions keep the stigma alive Sixth Finding Medical and mental support only succeeds in combination with public education The following discussion demonstrates proof for the mentioned key findings above. Each finding is supported by direct quotes from the interview transcripts (Appendices 4â€“7). Furthermore, the learnings of the practical research are summarised in Chapter 4.7: First Learning Vulnerability is crucial Second Learning Considered decision about the audience Third Learning Create a common understanding
Figure 17: Own representation of acceptance stages partly based on Sperle (2011).
4.1 First Finding: Sex education does not prepare one for a life with a sexually transmitted disease (STD) The strong stigma surrounding STDs is already a destructive force; however, we are taught in the very first sexual health education class how dangerous and scary STDs are. The stereotype of someone who engages in careless and irresponsible behaviour in their sexual life is deeply connected with a diagnosis. Unlearning this internalised perception while living in a society that strongly believes in the accuracy of these prejudices is an ongoing and long process.
There are a lot of toxic narratives I think to do with sex and STIs. I realised I internalised so much of this, so it is still going to take me a long time to completely unlearn it. Interview 2
The experience of Interviewee 3 affirms the positive impact of education and open communication within the family environment. She felt the obligation to educate her whole family and reports that her 26-year-old daughter reacted calmly and maturely to her own diagnosis. Normalising STIs in a form that everyone can talk about it would need to be achieved at an early age. Education can be a strong tool that can eliminate the shame felt by so many people living with herpes (Interview 3). The right information can empower, especially since there are many misconceptions. Normalisation could reduce the trauma already before the initial diagnosis. In addition, language has a massive impact on the stigma (Interview 3).
That’s a great result of being public about it, normalising it and getting rid of that stigma so that newly diagnosed people don’t go through the trauma. Interview 3
I know that rhetoric is a huge part of the conversation and the stigma. It’s rhetoric in both ways – it’s rhetoric to try to persuade people that it is no big deal while you also have to use rhetoric to impress what a big deal it is. It’s a very fine line. Interview 3
Understanding how a virus like herpes works and what the consequences can be as well as raising awareness of the sexual risks should be part of every education system for teenagers (Interview 4). Furthermore, the presentation of the healing process after a diagnosis as well as the necessary steps after a positive diagnosis needs to be addressed (Interview 2).
Education goes hand in hand with open communication. This relates to communication within a school system as well as within a medical environment and in social situations. Familiarity with STDs could make the handling more empathetic and appropriate (Interview 2). Education goes beyond the school – it goes as far as educating people in your own social environment. Sharing the experience with friends is probably an easy way to educate and learn from each other. Interviewee 3 uses cold sores to involve people in the conversation and clarifies during the exchange that they are the same as herpes. Furthermore, calling out misbehaviour like disrespectful comments and non-disclosure is essential in order to stop the stigma (Interview 2, 4). Public jokes need to be inhibited by immediate action as executed by two participants (Interview 3, 4).
4.2 Second Finding: The way herpes is contracted could have a major impact on coping The untrackable history is one of the complex aspects of herpes (Ebel and Wald, 2007). This might be an indicator for additional psychological struggles. Unanswered questions could engender a lifelong struggle. The circumstances of the transmission might be a crucial factor for the future mindset. Two decisive aspects were discussed as an influence related to emotional distress: knowledge of the status from both sex partners and the own role associate with the transmission. 3 out of 4 participants have genital herpes and remember the event which triggered the first outbreak. Receiving herpes from someone who was unaware of the herpes status indicates that not knowing the status could bring more risk than knowing (Interview 1). The connection between the unintentional transmission and the knowledge gap could establish feelings of a self-inflicted injury. Interviewee 2 assumes she got genital herpes from her last sex partner, but he tested negative. There are two feelings connected to this situation: Either the realisation that negative blood tests are not always accurate or the guilt of not realising one’s own status:
I might have had it for a while and never knew… Interview 2
An HSV positive woman who did not disclose her status transmitted genital herpes to Interviewee 4. Withholding information about their status from a sex partner could cause stronger feelings of regret. From a psychological perspective, apportionment of blame plays a relevant factor in the acceptance journey. This situation raises many issues about the reasons behind the deliberate withholding. There could be many possible explanations from not recognising the relevance of disclosing to the fear of disclosing. Interviewee 4 does not want to repeat the mistake of not disclosing to a sex partner: “It’s just unfair, it happened to me, I don’t want to give it to someone else like that. Responsibility is key.”
The diagnosis of participant 3 demonstrates a striking difference. She has been living with oral herpes since she was ten years old. Society made her believe her cold sores had nothing to do with herpes. Three years ago, she acknowledge it as herpes and educated herself.
“... I remember having been very ashamed growing up. I mean I even got to a point where I put starter fluid from a car on a towel and dabbed my cold sores to try to dry them up. … I would get them so bad that I would not even go to the grocery store. So I grew up with a lot of shame around it but I never thought of them as the other herpes.” Interview 3
Due to her situation, the healing process of Interviewee 3 is distinct: “I never went through what a lot of people went through, which was having a genital outbreak, having it be really painful and associating it with something I did sexually.” As she explained, her diagnosis was never connected to her sexuality since she likely contracted herpes from her mother when she was a child. Her mindset never included the punishment related to sexual behaviour and she would never feel shame for something that came from her mother kissing her. Nonetheless, she dealt with a lot of shame because there was no way to hide the oral herpes. Interviewee 3 also explains that the stigma of the diagnosis can hit people extremely hard: “I talk to people that really think about killing themselves.” The variety of these cases show the complexity around herpes. Every situation has other conditions and aspects that could influence the way of coping with a herpes diagnosis as well as the decision of disclosing in general.
4.3 Third Finding: Medication can provide reassurance or be a reminder of a health issue It has to be taken into consideration that none of the participants is dealing with severe physical symptoms and frequent outbreaks, which could have influenced the decision of forego medication after the initial diagnosis. In addition, 1 out 4 has not had a second outbreak and did not respond well to the Valtrex. Taking medication for health issues can create reassurance through the act of doing something about it. Medical professional usually prescribe antivirals after the initial diagnosis. There are different facets of reassurance: one is the need to act at the beginning and the other one is the reassurance for the sex partner. Taking antivirals is associated with fighting the virus and gaining control, especially after the initial diagnosis (Interview 1, 2). As pointed out by Interviewee 3, most people do not take their medicine except when they have an outbreak or have intercourse with someone that is HSV negative. Antivirals can also be a vehicle to reassure a sexual partner; however Interviewee 1 explains that she does not want to give her partner the false belief that the
antivirals will completely prevent transmission. Furthermore, she is unwilling to take antivirals only to make her partner feel safe. The contradictory aspect of the medication is the nonverbal language and the role as a daily reminder which perpetuates the stigma:
â€œIt is not even the communication and the message sent from society, but there is even a dialogue through the medication. The medication canâ€™t speak but there is an inner dialog that goes on there, associating yourself with the medication and being sick.â€? Interview 3
It goes as far as associating the daily medication with a death sentence (Interview 1). Alternatives were mentioned by 2 out of 4 participants: lysine (natural supplement), olive leaf extract (to support the immune system) or tea tree oil (curing and preventing infection). In addition, experimenting and the knowledge of which foods can trigger an outbreak leads to more control. Last but not least, shame can be an insurmountable obstacle, even preventing some people from seeking medical help and the appropriate treatment (Interview 3). In general, there is a common belief that there is no need for medication and the body, especially the skin, will heal itself. The findings provide a hidden conversation about medication as a personal decision. This indicates the desire for ownership and control over the own body, which might be connected to the uncontrollable experience of the virus transmission.
4.4 Fourth Finding: The feeling of losing control is a large part of the experience, especially for newly diagnosed people Diverse emotions and fears (Figure 18) are part of the acceptance journey. The fears might exist in a short time period but can also lead to a lifelong trauma (Merin and Pachankis, 2011). One of the participants (Interview 2) stated existing anxiety and depression before the diagnosis. One of the fears is strongly connected to the possible rejection if the STD status is disclosed. Even though disclosure is still received as a burden (Interview 1,2,4) all participants reported that they disclose to their sexual partners. One participant did have non-disclosed sexual intercourse once; the disclosure after sex was accepted but was accompanied with guilt (Interview 1). The order of disclosure and having sex can make a difference in order to maintain trust (Interview 2). There was no major change connected to the sex life or pursuing sexual desires mentioned. However, one participant only dates herpes positive people (Interview 3), because she does not want to be responsible for spreading herpes or demanding an HSV test (Interview 3). 0 out of 4 participants has reported that someone contacted them because they transmitted herpes.
Disclosing to sex partners is the mature way to deal with the diagnosis, but it also requires a mature response from the partner (Interview 4). Interviewee 3 was struggling with the knowledge that her former sex partner has herpes but due to his denial does not disclose to other potential sex partners. Interviewee 1 even mentioned that she used to stay longer in a relationship because of the obstacle to disclose to a new person. Not taking a negative reaction personal is a method that protects self-esteem and maintains a positive attitude (Interview 4). Disclosure comes down to accepting that the reaction and behaviour of other people cannot be controlled (Interview 2). Google provides many horror stories and shocking pictures, which is not helpful to reducing the fear (Interview 2, 4). The fear of disclosure can go as far completely isolating oneself from the society outside of the herpes community.
… it seems like some people isolate themselves and they don’t even have friends that don’t have herpes because they don’t want to have the conversation. Interview 3
“My first thought was that I will never be able to have children. I will never be able to date anyone else again. I just have to take the secret to my grave.” (Interview 1) “… can I still pretend I’m just cold sore girl? … and dealing with the guilt that he is sleeping with people and not telling them. I know, so if they get it I’m just as guilty as him.” (Interview 3) “My biggest fear was still feeling this awful and being isolated 20 years from now or after 20 years realising that it wasn’t a big deal after all.” (Interview 2) “I was really self-hatred… I thought that I will never find anyone, I’m never going to be with anyone, and that no one will sleep with someone who has herpes.” (Interview 4) Figure 18: Map of emotions (Batliner, 2017).
Online STD dating websites provide a way of dating without the fear of disclosing. “Positive Singles” has been used by 3 out 4 people.
“When I realised that we don’t really have anything in common except our condition. I opened up enough to date people without the diagnosis.” Interview 1
3 out of 4 participants only tell people if they have to and they included at least one family member or friend in their disclosure. The ones who included their parents disclosed only to the same sex (Interview 1, 4). This might be coincidence but it could also indicate discomfort of disclosing to the opposite sex. One person (Interview 3) made the empowering step to become public about her status. One essential aspect of the content of the disclosure was mentioned by Interviewee 3: “You need to give them the worst case scenario and the best case scenario. You need to tell them that the majority of people who have it never have an outbreak and it never affects their life but they can spread it through shedding. You need to tell them that there are people who get it so severely they can’t get out of bed.” Showing the whole range of the effects is relevant to ensure that the potential sex partner can make an informed decision. Many people who are active in secret groups contradict this by presenting herpes as “not such a big deal” even though they feel like hiding (Interview 3). The realisation of the interdependency from a healthy body and good mental health was guidance for a more relaxed mindset and fewer outbreaks were reported (Interview 4). Changing the focus was a method mentioned by two participants (Interview 2, 4) which led to a more positive attitude and supported the healing process. In summary, there is an agreement related to not being willing to lower the dating standards and being reduce to the HSV status (Interview 2). Once they came to terms with their diagnosis disclosure was seen as an obligation to educate others.
4.5 Fifth Finding: HSV negative people as well as HSV positive people who believe the common misconceptions keep the stigma alive The knowledge of the stigma origin empowered Interviewee 3 not to be ashamed. The motivation of Interviewee 2 to get over the stigma is the following: “I don’t want to be another doom and gloom narrative...” The bad public image has created some strong opinions, in and outside of the herpes community. Many people from the community have internalised the stigma so much so that they are not aware that they keep it alive. There is an extreme opposition and a defending mechanisms in the herpes community which does not welcome any new perspectives (Interview 3). The role of the stigma was culturally and socially constructed and can differ from country to country. Oral herpes cannot be hidden
and symbolises a public label (Interview 3). Fighting hidden battles, isolation, avoiding open communication as well as misinformation keep the stigma alive (Interview 2). Many misconceptions were mentioned by the four participants.
Stereotype The false impression that only certain people get herpes occurs from the linking of becoming infected with unprotected sex (Interview 2). However, it is a fact that safe sex does not completely prevent the spread of herpes. The public awareness of people living with STIs is led by the stereotypical imagination of someone practicing a lot of casual and unprotected sex with diverse partners. This indicates that misbehaviour and fault are connected to STIs. Women in particular suffer under this kind of slut shaming. As mentioned by one person, the transmission of herpes can also happen through forced sexual contact, like a sexual assault. There is no differentiation if you are a virgin or an expert practicing sex; the risk of transmission is always part of it.
It is a lottery bet that is very easy to lose when you are sexually active. Interview 2
Differentiation and Naming Both virus types (HSV-1 and 2) can break out in different body locations. There is the belief that oral herpes is not the same virus as genital herpes (Interview 3): “It is the exact same thing other than a few proteins – it’s just in a different location.” This false perception misleads and discourages people living with oral herpes, also known as cold sores, to take precautions and results in a higher chance of transmission. The assumption that cold sores have nothing to do with herpes adds to the misunderstanding (Interview 4): “... they will laugh and joke about it and you see them again and they will have a cold sore on their lip.” Clarification is essential to clarify communication that no matter if it is called cold sores, oral herpes or genital herpes precautions are relevant, because this knowledge gap has enormous consequences:
“75% of new genital cases are HSV-1, they are coming from people with oral. So it’s the people with oral that think it is not so bad, who are spreading the herpes everywhere.” Interview 3
Status As detected by one participant, the chances of contracting herpes from someone who is unaware of the status is just as likely as the transmission from someone who is HSV positive. Not knowing does not protect. On the contrary, people living with herpes usually take more precautions to prevent transmission. Furthermore, a blood test can be inaccurate and show a false negative as well as a false positive (Interview 2, 4). The unawareness of this possibility can cause unintended careless behaviour and needless suffering (Interview 2): “It just goes back to that you are more likely to get it from someone who doesn’t know at all. Which I think is something really important to make people aware of.” In conclusion, the inaccurate information not only misleads society but also people living with herpes.
4.6 Sixth Finding: Medical and mental support only succeeds in combination with public education Ella Dawson, social media manager and sex writer living with herpes, was brought up by two people (Interview 2, 3) in the context of being a role model who is well educated and communicates openly about herpes. Being public about the status can shift the shame to empowerment. However, not everyone is in a suitable position. In an unsafe environment with ignorance and judgement coming out could be risky. “... I already established a level of respect and admiration from people in the community… I feel I have to speak even louder because there are so many who can’t speak at all… speaking publicly I have never been shamed. The only time I have been shamed is inside the secret private groups (Interview 3).” The fact that the shame is coming from one’s own community is shocking. All participants confirmed that online support groups were a helpful option at the beginning. However, two participants stepped away from some support groups due to negative content (Interview 2, 3). Interviewee 3 sees support groups as critical, because limiting the social connections only to people from the herpes community could be dangerous, it perpetuates the stigma and creates a secret society. The assumption could be made that people who told their friends about the diagnosis are less in need of a support group. Many people actually live with herpes without using any support groups because they have found their own way to deal with it (Interview 3). In addition, all participants confirmed that the level of acceptance is a factor that influences the need for support groups. Two participants are not ready for public disclosure yet (Interview 2,4).
You can control how you want to maintain your presence I think but you can’t control how other people are going to react. Interview 2
A public disclosure can empower but it can also take control away. For Interviewee 1, it is not an option: “... It is just something so personal that I need to keep this to myself.”
Even if public disclosure is not an option, there are other ways to make an impact. Interviewee 2 took part in this research in order to reflect on her experience and empower others. Interviewee 1 is still attending support meetings even though she does not need them anymore: “I just think it’s helpful for me to share my experience and to be a listening ear for other people who are newly diagnosed.” There are many future needs especially connected to the initial diagnosis as well as the dealing with the topic in public situations. Both needs lead back to the shame that can be created in these situations. 1. Accurate information and prevention through eliminating dysfunctional education systems (Interview 2). 2. Reassurance and empathy from a medical professionals was one of the factor which was mentioned to create a better patient experience (Interview 1, 2, 4). 3. Guidance for newly diagnosed people to show them the right direction by providing valid sources (Interview 4), counselling (Interview 2) and support groups led by people who are confident about managing and living with herpes (Interview 4) will reduce some of the struggles. 4. Transparent representation of herpes in the media and on the Internet needs to be ensured and bullying prevented (Interview 2, 4). Celebrity news like from Usher add to the bad image (Interview 4).
4.7 Findings Storytelling (Practical Research) Additional findings were collected through practical research on a human-centred storytelling approach. Concrete learnings and the detailed process are documented on the following website: http://eliminatethestigma.tilda.ws/. The discoveries of this storytelling experiment demonstrate how difficult the conversation can be even for someone who feels comfortable about living with genital herpes and talking about it with family and friends. The inexperience of standing in front of a camera might have had a minor influence on this experiment. The practical approach showcases the struggle through a real example and the following core findings were discovered: 1. Hiding vulnerability to protect ourselves from verbal insults about STDs is a survival mechanism. However, the experiment showed that vulnerability is crucial to create impact by connecting the topic to a human experience. 2. Opening up about about a taboo issues like herpes can include deep-rooted fear and shame. It is essential to make a considered decision about the audience which also includes critics. A trusted environment is a suitable start to practice the storytelling. 3. Powerful rhetoric, body language and explaining expressions is a way to create a common understanding and ensures the message is received by the audience. Stigmatised words like “herpes” can be used repeatedly to add it to the vocabulary.
5 Conclusion and Recommendations This section combines the conclusion of the research with suggestions for future implementations and research areas.
5.1 Conclusion This study was conducted to create space for an open dialogue to accept herpes as a regular skin condition in society. The complexity around herpes is a loop with no beginning and no end, which makes it tough to provide transparency to the public. The damage which many people have to endure through living with a stigmatised condition is hard to repair. Failing sexual health education systems, misrepresentations in the media and ignorance in our current society lead to unbearable pain for a condition that is medically manageable for most people. The primary data concludes that the communication around herpes is weak in many aspects. This was demonstrated by the finding that sexual health education does not prepare one for the possibility of contracting an infection or offer a method to communicate openly about it. The inability to talk about herpes because it is sex related can cause withholding of significant information. The accurate information does not flow and the misconceptions are unmistakably loud. These are the main obstacles on the way to acceptance for people living with herpes. Even though people with oral herpes feel ashamed, society accepted it as a minor condition which leads to tremendous medical consequences due to unawareness. Whereas people with genital herpes are banished from society, even though it is the exact same virus family. Therefore, it is highly important to introduce transparency and not exclude the public from the support system. A combination of support and public education is vital. The right language supported by visual representations could ensure accurate information and reduce the stigmatisation. More transparency can create a basis for discussion and simplify disclosure. Twisting and personalising existing destigmatising strategies offers new ways to cope with herpes. Living with an STD is connected with the obligation to educate. The practical part of this research is dedicated to storytelling and instances the way of empowerment for people living with herpes in order to broaden the horizon. Personal stories create an emotional connection and question societyâ€™s standard for a long term impact. The practical research demonstrated how crucial it is to receive feedback and iterate the story to create impact. Preparing and reflecting on the own story helps to define a clear outline for disclosure in private relationships and can additionally be an approach for future public disclosure. The website http://eliminatethestigma.tilda.ws/ is a basis for engagement. The gap between the theoretical research and the practical experience of struggling with conversations about herpes was filled by the human-centred concept. It proved the feasibility and also demonstrated the existing difficulties. With the intention to build an impactful social enterprise to educate about the condition and integrate stigmatised people in society the researcher wishes to continue this research.
CONCLUSION AND RECOMMENDATIONS 46
5.2 Limitations The researcher’s experience of living with herpes added credibility to this research. The personal involvement allowed access to support groups and created a trustworthy environment to conduct this research. Due to the personal background the analysis of the data could be biased. The sensitivity of the topic and the limited time resulted in a small sample, which made a generalisation impossible. The participants were contacted through support groups, which excludes the perspective of people dealing with herpes outside of the community. The aspect of a female majority could be random considering the small sample, nonetheless the research does not represent a clear male perspective. The cultural differences of the participants could present an additional limitation.
5.3 Recommendations and Implementation Three recommendations result from this research; each recommendation focuses on a different target audience. It is advised to combine recommendation 1 or 2 with either 3 or 4 in order to address the public.
Recommendation 1: Design Campaign to educate on Instagram In order to create more transparency around herpes and to clear up the misconceptions, a new visual language should be taken into consideration. Instagram has 400 million (DMR Stats, 2017) daily active users. This creates the opportunity to start the education about herpes through a natural channel (Figures 19a–c: Successful examples). Taking advantage of the intuitive behaviours of the user and not creating more effort for the target audience helps to support the engagement, as proved by the examples of diverse social activists below. Through the suitable use of hashtags and following influencers can reach can be expanded (Appendices 8–9). The Instagram account can easily be shared in HSV support groups and the setup targets people dealing with herpes without excluding the public.
Figure 19a: Instagram of Lauren Wasser (left) model and activist for amputees. Figure 19b: Instagram of Madeline Stuart (middle) model and advocate for inclusiveness and diversity in modelling. Figure 19c: Instagram of Jessica Walsh (right) designer and supporter to talk openly about mental health. (Instagram, 2017)
CONCLUSION AND RECOMMENDATIONS 47
Recommendation 2: Tell a Friend This is a campaign intended to encourage people living with herpes to tell at least one of their friends about the diagnosis and the daily experience of dealing with an STI. According to Foster and Byers (2008) the personal connection to someone who is living with a stigmatised condition can refute the negative assumptions around the stereotype and enable a new perspective. This is an approach to use storytelling to influence people. The learnings from the practical research http://eliminatethestigma.tilda.ws/ can support the disclosure process.
Recommendation 3: Prevention and Guidance through Video The relevance of video content is undeniable. Video tutorials could create an authentic way to educate especially young people. This could be used for guidance of newly diagnosed people. It is relevant to provide valid resources, this could be a step-by-step guide from the initial diagnosis to the day of acceptance. The emotional aspects play a massive part and video tutorials could offer visual explanation as well as a representative voice from the herpes community.
CONCLUSION AND RECOMMENDATIONS 48
Recommendation 4: Peer-to-peer Support The third recommendation connects newly diagnosed people with people who are experienced in living with herpes. This could be in the form of peer-to-peer support. On one hand, newly diagnosed people have moral support, which is relevant to reduce the chances of major mental health issues related to the diagnosis. On the other hand, people living with herpes for a longer time frame can find a new life purpose in supporting others. “Positively UK: Peer support for people living with HIV” is one of the practical examples based on the EAST framework (Figure 20) which could be useful to compare with (Burd and Hallsworth, 2016).
5.4 Future Research Projects It is necessary that future research focuses on specific destigmatising strategies for herpes. In addition, the gap between the bad image and unsuitable language needs to be closed using a new approach. From a design perspective, a study around a suitable visual language could improve the public representation.
Remove small barriers to support
Set smart goals
Reward small achievements
Bundle “health” and “people” benefits together
Tap into reciprocity
Anticipate challenges and make “if-then” plans
Use Motivational Interviewing and decisional balance charts Support when people are most receptive
Promt healthy habits
Involve family and friends timely
Incorporate social commitments
Build positive feedback loops
Connect with peers
Figure 20: Own representation of EAST framework: Four Simple Ways to Apply Behavioural Insights based on Insights (2014).
CONCLUSION AND RECOMMENDATIONS 49
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The Helper (date unknown) The good, the bad, and the stigma. Available at: www.thehelpernewsletter.org/ index.php?option=com_content&view=article&id=161:the-good-the-bad-and-the-stigma&catid=173:in-the-media&Itemid=236 (Accessed: 1 August 2017) Thu-Huong, H. (2013) How should we talk about mental health. TED. Available at: www.ideas.ted.com/howshould-we-talk-about-mental-health/?utm_campaign=social&utm_medium=referral&utm_source=facebook. com&utm_content=ideas-blog&utm_term=social-science (Accessed: 9 May 2017) Underhill, A. (2016) Sexually Transmitted Infections and Intimate Relationships: Exploring Intimate Relationships After Diagnosis Using a Strengths-Based Approach. The University of Guelph. U.S. Food and Drugs Administration FDA (2011) Fraudulent Products: Sexually Transmitted Diseases (STDs). Available at: https://www.fda.gov/Drugs/ResourcesForYou/Consumers/BuyingUsingMedicineSafely/MedicationHealthFraud/ucm252230.htm (Accessed: 7 August 2017) Warren, T. (2014) The Updated Herpes Handbook. Portland Press. Woods, N. (2014) Describing discourse: A practical guide to discourse analysis. Routledge.
Appendices OVERVIEW 57 Appendix 1: List of Products 58 Appendix 2: Example of an HSV Journey Map 59 Appendix 3: Interview Guide 60 Appendix 4: Interview Script 1 62 Appendix 5: Interview Script 2 66 Appendix 6: Interview Script 3 79 Appendix 7: Interview Script 4 92 Appendix 8: Instagram hashtags and influencer 101 Appendix 9: HSV journalists and media contacts 103
Appendix 1: List of Products
U.S. Food and Drugs Administration FDA (2011). List of OTC Products Falsely Claiming to Treat or Prevent Sexually Transmitted Diseases (STDs). Available at: https://www.fda.gov/Drugs/ResourcesForYou/Consumers/BuyingUsingMedicineSafely/MedicationHealthFraud/ucm253405.htm (Accessed: 7 August 2017)
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Appendix 2: Example of an HSV Journey Map
HSV-1 (Genital Herpes)
Acceptance Events Stage (blue post-it)
Feelings (orange post-it)
Thoughts (yellow post-it)
Positive / Negative / Neutral
I need to focus on work. I'm sure it's nothing.
Outbreak and initial HSV diagnosis (Hospital)
ashamed, embarrassed, betrayed, dirty
Shit what do I do? Who do I tell?
2 weeks work absence
overwhelmed, punished, worthless
Why me? I deserve this. I'm trapped.
Waking up everyday, feel like in a bad dream, crying all the time
lost, powerless, alone, hurting
It has to be curable. It's a bruden. I donâ€™t want to deal with this.
Talk to family and get positive reactions
I am still the same person as before. I have to deal with this. I will still love myself no matter what.
Research and education
painful, empowered, open, curious
Where do I find valid sources? What is true? How can I educate myself?
Life hacks and natural medicine
I need to find my own solutions. How can I deal with the pysical pain?
Talk to friends and positive reactions
reliefed, nervous, supported
How should I tell my friends? What will they say and think?
Talk to currentsex partner and reaction angry, stupid, vulnerable (not understanding)
How could I be this stupid? Why is he not clever enough to understand? I did what I had to do. I'm done now.
Text message to former sex partners
I need to take responsibility. This is only fair.
Hygiene obsession and fear
Everything feels dirty. I scared that I spread it.
Not able to talk about it in daily life
I have to hide. I need to suffer silently.
Get away trip and ideas
There has to be a way to make this right. What could I do Positive Experience to help? I need to do something.
Fear and limitation in dating
Can my future partner deal with it this? It is sad that people limit themselves out of fear.
Blood test HSV-1 and HSV-2 negative (Physician Switzerland)
If it is not HSV, what is it? This uncertainty is killing me.
Don't be so hard on yourself. It is not that bad.
Negative Experience Neutral Experience
Something is wrong feeling
I know something is wrong. Who can help me? I need to depressed, sad, helpless trust my intuition.
Outbreak and stigmatising experience (Physician USA)
How could he say that? Why didn't I defend myself?
How can I become a role model myself? All the people I met, made up for the pain.
I didn't have a choice. I have the choice how to deal with it.
Support Meeting (USA) role models
New mindset and dating who I want to
Outbreak and swabtest positive HSV-1 reliefed, clear (Physician Switzerland)
Sick for almost a whole month
Need for change and quit job
It was hard to quit my job, but I need a new start.
Working on HSV ideas
HSV is a responsibility and life long task, better make it a fun one.
Decision no regular use of medicine
Ambassador Master project HSV Acceptance
Neutral Experience Negative Experience
HSV is my personal warning system.
inspired, passionate, curious
HSV is not my weak spot, it is what makes me stronger.
Embrace your trauma and make it the strong part of yourself.
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Appendix 3: Interview Guide (Study Information and Interview Structure)
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Appendix 3: Interview Guide (Study Information and Consent Form)
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Appendix 4: Interview Script 1 June 30th 2017, 9pm, approx. 45 minutes Gender: Female | Continent: North America | Age: 26 Timeframe of living with Herpes: 7 years | Type: HSV-2 (Genitals) R = Researcher / I = Interviewee
R: Would you like to share your HSV story with me? I: When I got diagnosed, I think I was 19 and there was a neighbor. He lived on another floor in the same building. Eventually we became intimate. Two days after we had sex I started to have all these symptoms of an outbreak and of course, in that time I didn’t know it was. When we had sex the condom actually came off and it got stuck inside of me. I wasn’t able to get it out until the next day the whole situation was just really crazy. I also got my period during that time. So when I tried to go to the gynecologist they told me that I had to wait until my period was gone. So instead of going to my gynecologist I went to the emergency room and they said maybe it’s just a UTI. They did the swab test to see if I had herpes and it hurts so bad. Whatever was on the swab test that they used, it burned so much. At the end, they just gave me medication for UTI. They didn’t diagnose me with anything. I did have pain while urinating but it wasn’t because I had a UTI but because I had an outbreak. I ended up going to my gynecologist after all, so after my period was over. I think I still had the outbreak within that time frame and when she did the visual examination she said she’s pretty sure it’s herpes but we will do the blood test anyway. So I had to go downstairs in the building, to go to the lab where they did the blood test. I was already crying on the way, because she basically already told me I have herpes and that’s not what I wanted to hear. One of the things I remember from taking sexual education classes in high school was that there are STIs which go away and others that don’t. I knew that herpes wasn’t dangerous enough to kill me, but I knew I would have to live with this forever. I was already reacting emotionally, before the results even came back. A week later they called me and told me that I did have herpes. That was devastating, because when you’re 19 or 20 years old and you’re in college you just want to be young and free and hookup with people. That was not what I wanted to hear. My first thought was I will never be able to have children. I will never be able to date anyone else again. I just have to take the secret to my grave. I will never be able to tell anyone. Going through the whole diagnosis my mom knew what was going on, because I wasn’t feeling well and she went with me to the emergency room. When I told her my diagnosis she found a support group for me. She used to go with me the first couple of months. She would go with me and sit there the whole time. It was really helpful and eventually I started going on my own and she didn’t have to come anymore. I never stop going. I was 19 when I got diagnosed but even now that I’m 26, I’m still going to the support group. I’m going every year. Now when I move away I will try to find one
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in California. I just really like that support system, even though I am over it. I don’t cry everyday and it doesn’t make me sad anymore. I just think it’s helpful for me to share my experience and to be a listening ear for other people who are newly diagnosed. My mom knew my diagnosis, she was very very supportive and helpful. The group was really helpful because I meet people. Since I was single I used “Positive Singles” to go on dates with other people who have herpes, but I felt like I was closing myself in when I was only dating people in that circle. When I realised that we don’t really have anything in common except our condition. I opened up enough to date people without the diagnosis I ended up having a boyfriend and I told him. We actually already had sex before I disclosed to him and I felt so bad after. He was ok with it. We dated for 2 years and then it ended. I date other people and I disclosed to around 10 or 11 guys since I was diagnosed until now. I am completely okay with it. It is just annoying. I don’t get outbreaks a lot, but the thought of having to disclose to people is annoying until you eventually find that person you want to be with for the rest of your life. We talk about this in the support group sometimes. Once you have to disclose to someone and you start dating that person you usually stay in the relationship a bit longer than you should. Even if you know it’s not working, because you already disclosed you are already comfortable with that person. With every guy I dated I stuck around a little bit longer, just because I didn’t want to think about having to date anyone else. I had a boyfriend last year and we broke up in December. We’re still friends and everything, but once I move to California I will start all over and I will go to that support group there. I will eventually have to tell other people, if I’m interested in dating them. I’m not really looking forward to that, but it’s just the part of what I have to live with. I think as far as the Facebook groups go, at the beginning I used to look in these groups every single day. As time went on, I stepped away from it. It’s just a small aspect in our lives. I comment on posts every once in awhile, but it’s not my whole life. I don’t even go to as many social events as I used to. Now I go to the support group meetings, but that’s about it. As far as disclosing goes, I found that most people just appreciate your honesty and when I tell people I come of in a way, where I get them the information and I take away the opportunity from them to project their feelings onto me. I tell people I’ve had it for this amount of years, I have helped run support groups and I really don’t get outbreaks that often, because the longer you have it, the less it affect you. No matter what your decision is, I respect that either way. I just want to be honest about it. I don’t really give someone the opportunity to say: “oh my god that’s disgusting”. I don’t care what they decide. It doesn’t matter to me. We can be friends, you can be my boyfriend or we can never speak again. I just want to be honest with you and that’s what I’m doing. I don’t care what happens from here on. I just wanted to have the opportunity to tell you something, that is very important if we are going to pursue something further. This approach is always really helpful for me. It also shows you the person’s character. If someone doesn’t want to be with you over something that’s so small and minor. That’s how I look at it too. R: Is there any other support that you would have needed on the way? Or is there any support that has helped you in particular?
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I: I think the support group is more for people who need to cry everything out it’s really more social. It allows you to know you’re not the only one out there and there are other people who go through the same thing. On the day I go diagnosed, my mother actually called my sister. My sister has HPV. My sister said to me that all you have to do is to take your medicine and you will be okay. That wasn’t something that the gynecologist said to me and it wasn’t something that anybody else said to me. But to hear that, the day I was diagnosed gave me hope. This was not the end of my life and maybe it really would be okay. I think that was definitely helpful. I didn’t get any brochures or information from the hospital or the doctor. R: Has your perception of the condition and of the stigma surrounding it changed, since you were first diagnosed? I: I think the stigma is crazy because it’s really not that big of a deal. I think the more people that come out in public and share their story, that will probably help to eliminate the stigma. But because the stigma exists, most people don’t want to share something that is so personal. It’s so personally, you don’t always want all the people to know. My experience was a little bit different from yours, if they don’t need to know I didn’t tell them. I didn’t tell any friends, I didn’t tell anybody besides my mother unless it was someone I was dating or interested in dating. It is just something so personal that I need to keep this to myself. R: Any strong feelings or thoughts during the process? I: My life is over. I’m never going to be able to do the things I want to do romantically. I think the best way to look at it is the morning routine. In the beginning the mornings, that life that you used to have has changed, now everything is different. Once you get to the point of acceptance and you’re not crying everyday, you get on with your life the way it should be. R: What was the biggest challenge you had to overcome? I: Honestly, lately I have been thinking a lot about settling down and having children. I’ll be 30 in a few years. The fact that I’m a flight attendant now, I feel like it puts even more of a burden on my love life. I have to tell somebody, I’m going to be gone a lot and I have herpes. So two things they have to deal with. I think it will be a really interesting dynamic getting back into dating now. Last year, I was dating someone for 6 months but after we broke up I haven’t really been dating anyone. Now that I move I don’t want to focus just on work, I don’t want to put the romantic aspect of my life in the background. I do want to date. It’s kind of like being single is not the same, as being single before the diagnosis, because now it just something I completely dread because I have to tell someone all over again. Even though I have done it so many times and I’m comfortable with it, you still get a little nervous how the person will react. In the beginning I thought about having herpes every single day because I had to take medication daily. Now, I don’t think about it anymore, because I had it for so long and it really doesn’t bother me. I don’t want to be on medication for the rest of my life. It kind of feels like a death sentence, knowing that you
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have to take medicine every single day. I don’t do that and that’s why I don’t think about it every day. If I had to go through that ritual of taking medication every morning, waking up and taking a pill, than I think it would be a little different. Now, there are days or weeks when I don’t think about it and you don’t really think about it unless you date someone and you need to tell them. When I would disclose to people I would always say that there is a prescription that minimises the chances of passing it on to anyone. So if you want me to, I will take the medicine. And now, I don’t even give that option. If somebody truly accepts me with the diagnosis, there is nothing I can do to give a 100% guarantee that they won’t get it. So they have to be open to dating me and there is a possibility that they get it. They may not ever get it, but I didn’t want somebody to have a false believe that taking the medicine meant that everything is fine and that they would never going to get it – that’s not true. If there is something that can reduce the number of outbreaks, the science is already there, so they really could cure it if they wanted to. They just don’t want to because they make a lot of money, if we all buy prescriptions every month. I don’t really want that daily reminder. I don’t want to pollute my body with something that I really don’t need. It was helpful at a time, because I needed that reassurance. The prescriptions made me feel better at the beginning, just mentally that I knew I was doing something. But now, I’m just so passed it that I just feel I don’t need it at all. I even had outbreaks and I just waited out until it was away. There is no point of taking medication, it is unnecessary. I think our society is just reliant on medication even when we really don’t need it. The outbreaks happens on your skin and the skin is going to heal itself not matter what happens. So I can’t really say that the medication made them go away faster because either way they are still going away at some point. R: Thank you very much for being open about your HSV experience and sharing your story.
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Appendix 5: Interview Script 2 July 3rd 2017, 3am, 90 minutes Gender: Female | Continent: Australia | Age: 25 Timeframe of living with Herpes: 2 months | Type: HSV-1 (Genitals) R = Researcher / I = Interviewee
R: Thank you so much for your time. I will tell you a little bit about my story and if you have any questions just let me know. After that, you can tell me a little bit about you, whatever you feel comfortable with. For the research, I will collect diverse stories to figure out how people deal with different kind of situations, what the patterns are and where are the gaps. I want to understand the HSV acceptance journey of everyone to get to a point where there is no shame around herpes anymore. I got diagnosed two years ago. I’m 28 now. I have type HSV-1 and I have genital outbreaks. Once I had the first symptoms I didn’t really know what was going on. I tried to ignore it and I thought it might be a bladder infection or something. I played it down and I went to work and everything until the point where I couldn’t deal with the pain anymore. I could barely sit and walk. Two days later, I couldn’t wait till my gynecologist would open the office so I had to go to the emergency room. My mom dropped me off. Once I got there, they looked at it and diagnosed it as herpes. They didn’t do a swab test or anything, it was only the visual examination so for me that was not clear enough. I had a hard time accepting it since there was no written proof for it. I was off work for two weeks because the outbreak was so strong that I couldn’t really walk or sit, and even laying down was painful. I decided right away to tell my family and I also told some close friends. They were really open about it and accepted it, but on the other hand, they didn’t really understand what was going on. I also told my sexual partner and he didn’t understand what was going on at all. I think he didn’t want to understand. I disclosed to him, but that was the last conversation we had. After that, I started to educate myself and find out as much as I can. I also did a blood test to find out if herpes was the correct diagnosis. The blood test was negative, which was weird. It made me worry because I felt like I didn’t know what was going on. I also tried to find some support groups. In Switzerland, I couldn’t really find anything. I had already planned a road trip to the US for that summer. After the diagnosis, I connected with some people from the US support groups on Facebook and they invited me for a meet up in Washington DC. I went to the support meeting about 5 months after the diagnosis and it was a great experience to talk to some people who would really understand me. It gave me hope and it helped me to talk to someone in person. I learned a lot about the HSV testing and a lot of issues around it. So, I realised that my blood test could have been a false negative. I changed my doctor and then a couple of months later when I had another outbreak we could do the swab test and that confirmed that I have HSV-1. By then I already accepted my diagnosis in some way, I knew that this is not going away but to have it black on white helped me to process it. The major issues I had
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during this journey were really having the clarity to know what is going on. I felt helpless because I didn’t really know for sure what was going on and it made me uncomfortable. I had to fight a lot to get the clarity that I deserved and to find the right people. Now that I study Communication Design and herpes is part of my daily life I’m taking the final steps to fully accept it. I want to go public with my status to encourage other to open up and to make a statement to society that this is a skin condition and we can talk about it. It is nothing to be embarrassed about. Yeah, I guess that’s kind of how it got here and why I do this research. It has been amazing to do the interviews so far and I can still learn new things about herpes. Education is one of the things that have helped me to go through the last two years. That’s a rough summary of my story. Let me know if you have any questions. R: Are you ready to tell tho share your story? I: My story starts a bit like yours too. It was itching and I was in a bit of pain and of course, there was that denial – surely not. Otherwise, I would have more lesions and I could only find one but that looks like a pimple. But then, of course, the pain got too unbearable, so I went to the walking clinic and they said it looks like a herpes lesion, so they took a swab. So, a little bit about me, I’m 25 and I only got diagnosed a couple months ago. It is still very very raw, but I think there is a lot more information out there on the internet which has been great and a lot of advocacy as well. But it is still like, you know, there is still a lot of misinformation and I think that’s why, I was really hoping I wasn’t going to get that diagnosis but that was mostly the cultural stigma, because physically there is treatment for it and everything. I guess yeah I mean, so I went to the walking clinic and alright so it was very possible that I had it. I sort of tried to accept it but also hoping – like trying to rationalise or it could be something else. It could be a boil or pimple or something that got infected. But then, because I was in pain, I still had a lot of crying fits as well. I was put on the Valtrex treatment and that made me very sick. So one of the side effects is gastro, vomiting, diarrhea and all sorts of things and my body reacted very negatively to it. Which was also very unpleasant and it didn’t help my mood at all. And then finally I got the phone call saying I got HSV-1 and it was just like okay alright and I was like actually surprised that you can get that downstairs. My understanding was that it is the oral one so I thought well what’s the difference and just wanting to know. There treated the same as well but then try to find information on that too, but all I really wanted was the doctor to reassure me that it is not going to be a big deal. I think that bedside manner I think, I wanted it to be non-judgemental and all of that but you don’t want it to just end there. You want that reassurance that it is not going to be terrible. Obviously, disclosing is going to be scary but it was kind of like “here is you diagnosis see you”. And that made me, you know at the time I might seem okay but it’s shock and sort of thinking I might have had it for a while and never knew but I think it did come from my last partner and of course he didn’t know he had it. Eventually, I’m now dealing with this and the doctors can just go back and do their job and not have to see me again. And I found that when I was coming to terms with all of it I found that that was very upsetting. Apparently, there was supposed to be counseling but I
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think the counselor might have moved on from that clinic but no one mentioned it. I did finally talk to my counselor for the first time about it a couple weeks ago. And she didn’t judge me at all and she was really happy that I told her and I have been going to her for anxiety and depression anyway. So when she said there is usually a counselor at the clinic there and I don’t know if she moved on - there is no mention of it – nothing, no support, not even reassurance that it is not going to be terrible. It was just like “here you go see you”. Better that than someone judgemental but it’s just still not good enough I thought. And then, of course, there was the disclosing to partners and luckily many people didn’t react negatively to it. I told a few friends and I haven’t told my family because I just know it’s just not worth it. I mean don’t have much of a relationship with immediate family anyway but that’s because of other reasons and I’m close to my grandmother but I don’t want to worry her. I got friends who are like my family so I told them and of course, I told my most recent sexual partners. The last guy, he didn’t start pointing fingers and he did apologise but it was also just a few other self-absorbed comments he made. But he identifies as asexual at the time but he’s got a libido so alright but then he said that no one’s going near my genitals again. And I just thought now, okay you can opt out of having a sexual relationship but I don’t want to. And I think when someone discloses you got to be mindful that they don’t want to opt out of a sexual relationship. They still want to enjoy it. I think it is also just be more reassuring. Try, even if it is just asking “are you okay?” and I might say “yeah yeah I’m fine”, but you don’t really know that they might be doing that to stay face and then I told a few other people and that was okay. One guy was like “it is really responsible of you, thank you for letting me know” and I was like “I have to let you know”. People seem to have really appreciated the honesty. And it is like “go get yourself checked” and when I realised how inaccurate some of these blood tests are for herpes, just because you come back with a negative result, it doesn’t mean you don’t have it. Probably, it is not going to show up in your system until you got an outbreak, so that’s why a lot of people pass it on without knowing and realising they got it. And then another female partner said, “you know I was scared that I gave it to you because my boyfriend gets it around his mouth and obviously we don’t do anything but you know asymptomatic shedding can still happen”. And one person was just like “oh well thanks for telling me and take care of yourself” but there was no sort of empathy there. It was kind of like you got to realise how much courage it took for me to tell you and I think people need to be more mindful of that. If it is text based I don’t even know what you are thinking. So, I thought I could say “hey that was not good enough that really hurts” but then I might open myself up to more insult. That could be one thing I could deal with but I didn’t really want to deal with it at all. So, I just let it go and I thought that’s just it. Lately, it’s mostly just silly questions it hasn’t been completely negative but I haven’t had many rejections. I had one sexual partner post-diagnosis and I was very upfront and he was like this stuff doesn’t actually bother me. And I said “well you are also likely to get it if somebody doesn’t know they got it. At least I know my status and can tell you”. Definitely, wear condoms even though they are not having an outbreak because you are still at risk with anybody else anyway. And that was something I realised
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just the other day, it wouldn’t really make a difference because I still got it despite the safe sex, despite the guy testing negative for every other result, me testing negative. At the end of the day, you just don’t actually know but it’s not that your life suddenly stops. Okay, I had this thing happen to my body but I have still survived it. There is still a lot of pain there and I’m still getting out of the woods because it is still so recent. I only got diagnosed in April, at the end of April. When I look in the support groups, I have seen so many people saying “oh my god I have isolated myself for 20 years”. I thought 20 years is a long bloody time to not have any sort of connection or withdrawing completely or isolating and I just knew I couldn’t do that. I’m not in a relationship but I’m not looking to settle either. I don’t want to just lower my standards and just deal with it because there is someone who wants me and I have seen a lot of people getting into those situations as well where the cultural stigma is so strong that they will just settle for someone even if it is no good for them. They are reducing their worth to that status which I just don’t think is right at all. And I mean it was really good that I got diagnosed when Ella Dawson was also making her TEDtalks and blogs. I just found her work very helpful as well and it was really good to find someone who is educated and well spoken to discuss that. Okay, you have the same strain as me and you look like every other girl if have seen at uni. There is such a misconception that only certain people will get it or it is like “oh you made a mistake”. I think the more sexually active people get, it is just inevitable that you get something just like you get any other infection ever. But we don’t stigmatise those ones. I was starting to think about a lot of horror stories to do with disclosure and a lot of it came from America. I know that there is a lot of cultural baggage around anything to do with sex. I thought to go beyond that kind of American thing. I had to think about so many Australians - so I’m from Australia - who had it, and most of the time I just got “yeah I was devastated but it didn’t actually affect my sex life at all”. Which is good because I had friends who also had other friends with the condition and I also got friends who had it too. It is just like it didn’t sound like it affected their sex life at all, so it didn’t sound like it affected anything. Maybe only one person said that it was a good way to weed out all the dick heads. And there are probably people who are superficial and judgemental anyway regardless of what your status is. I think it hasn’t actually changed my dating life that much because I haven’t really been seeking it out anyway. It’s still like for a while there “you have herpes, you have herpes, you have herpes” and it can be very very hard to repair your self-worth after that. I think the main thing is more education and finding support as well but also realising it is more than just a status. My life didn’t tell me to stop. I still had people who depended on me, you know, people who love me, I still had a job to go to, I still had things to do. That suddenly doesn’t stop just because you find out what your diagnosis is. I guess that’s my story for the most part so far and there are probably going to be a lot of other things coming my way too. R: Thank you so much for sharing! I have to say when I was in your position and just got newly diagnosed I could never have done this interview the way you did. I could never have
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shared it so openly because I would cry all the time and I think you have a very mature point of view. I admire you for that. I feel you are far ahead and it is amazing how far you got in this couple of months. I like that attitude of yours. I think when you mentioned at the beginning, that you had to leave the doctors office with no reassurance that everything is going to be fine, that’s also my experience. Just being sent away and not really understand what is going on. We would like to hear that “everything is going to be fine”. I felt my doctor didn’t really have a clue, they knew that I can’t have sex at the moment because I have an outbreak and they knew it is not going away, but besides that, I didn’t really get any information. I was there crying and then I needed to keep it together to ask them questions because they didn’t really tell me anything. They were not ready for my questions. They should know, even if they could just hand me a paper with some valid online sources or something that would have helped me. I think Ella is a really important person to end the stigma of herpes because especially young people can relate to her and she makes it really natural, she has a great attitude and she says what she thinks really straight forward. As she says it should be normal to talk about STIs. About the medication, like you said from your experience your body didn’t really handle it well and you got sick from it. The Valtrex made me very tired. How do you deal with medication since you had such a negative reaction to the herpes medication? I: I haven’t taken medication since I haven’t had another outbreak. I take the Lysine and olive leaf extract. Medically I don’t know if it is working. And of course, there is medical literature as well and you have to be very cluey about it and I read quite a bit. I read so many testimonies from so many people who swear by it, so you really got to make up your own mind. If I’m worried that I might get another one and it might not be likely. I don’t know but I just take the Lysine and follow the instructions and I feel at least a reassurance there anyway. And maybe just avoiding certain food that could trigger it as well, but it is kind of testing. “Ok, I got really drunk and it hasn’t triggered an outbreak, well done”. You know having chocolate or peanuts or something, you know if I’m getting really worried or if I’m getting a bit itchy and it could be from anything. I just thought “okay, just take the Lysine”. It doesn’t cost very much and then I haven’t had anything that painful since but they only found that one lesion and that was enough to declare me positive. The only reassurance that I got from the doctor was that they found one lesion and the first outbreak is usually the worst, so you probably not going to get it as bad as this. That was actually the only reassurance I got. I think there needs to be different training for the medical profession as well realising they are going to be out on their own when they have got it. They can take care of themselves but the reassurance is important, don’t just give them a fact sheet and that’s it, because that is literally what I was given and then just that phone call to tell me the diagnosis. You know at the time I wasn’t even crying, I just asked questions but I was still in shock - sort of in autopilot. And then afterward, it was a very delayed reaction and it hit me that I’m on my own with this and all of that. I went to my last partner because he was most likely the one who passed it on and I said “you know, I have not been doing okay”
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and I had to be completely honest “I have been having crying fits, the Valtrex made me very sick, I had depressive episodes and I’m not going to pretend to be okay just for your peace of mind. I’m dealing with this all on my own”. And then it was funny because when I was honest with him about it I started to feel better and I thought alright I can get on with this. And he did apologise again. “The fact that I got it has been drawn by the fact that I passed it onto someone else. And I don’t really know what I could do to make amends. Just check in and maybe realise it is not just about you”. I think another silly question I heard from a female partner was “what happens to you now?”. “I mean, what do you think? I’m not dying, my life doesn’t suddenly stop. Well, I get on with it and if I get involved with someone else I will cross that bridge when I come to it”. But it did stain and a bit more than I thought it would. I told a friend about it and she said I think you should say something to her and I just said “look” and I didn’t attack her or was nasty or anything I said “look I know it wasn’t your attention to be hurtful but it still did hurt me and you know your choice of words could have been a bit more tactful and I’m not dying you know, I will deal with it, but I had to so many grieving processes and be a peace with it”. Because they don’t realise what this emotional rollercoaster you are on as well and what you have gone through. All they know is that you just tested positive for something. And maybe they can understand how devastating it is but they don’t quite understand how to be empathetic in a proper way. You could have gotten any answer you wanted when you just ask a bit differently and I think that what some people need to realise. I think that needs to be on some education especially for young people or even for everybody. If someone disclosed to you, don’t be judgemental and be empathetic as well when you realise it took them a lot of courage to disclose to you, appreciate the honesty as well and don’t blame them for getting it. It is a lottery bet that is very easy to lose when you are sexually active. Don’t just say like “oh yeah fine, fair enough, take care of yourself” because that is not helpful either and also don’t make it about you. I guess that would be my advice to people who had a partner or has a partner who has just disclosed as well. I found when I was thinking about it, it’s not the actual virus that is the problem it is other people. The outbreaks can be managed, they can be treated. If the prescriptions are not working for you, if they make you sick there are alternative treatments, of course you need to be very cluey about it, but the information is out there you just need to be very discerning. That’s a lot of new information that could be useful anyway. I don’t know where I was going with that, but yeah. R: Do you think people are unsure how to react to a disclosure because we don’t talk about this sensitive topics enough? I: I think most of it when I disclosed was through text or over the phone. I had no idea what their facial reaction was like or anything. But I think it all comes to the lack of education as well and I mean sex education in Australia is not great. I think the best you get is that you can have sex but you need to understand the risks and get tested and that’s the extent of it. There is nothing about what happens if you get tested positive or what you can do, none of that assurance that if you test positive it’s not the end of the world. Understand
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that there are risks, but they make it sound like your life is over if you get any of these STIs. That’s probably why people have this sort of reaction because of that lack of education and that lack of understanding of how STIs actually work. And you always had it in your head that only a certain kind of person got STIs. STIs were always a butt of jokes as well. I think there needs to be more of a dialogue about it because usually, people don’t think about it unless it is affecting them I suppose. I think that education and communication need to be out there so that people do know how to react appropriately. It’s just very easy for the person who disclosed to blame themselves for the reaction and I think there needs to be a lot more of reassurance for them as well like “look it wasn’t your fault and you did the right thing by disclosing”. At the end of the day, you can’t control how other people are going to react to it. I read so many horror stories on the Internet and I think a lot of it is coming from America as well so I was very curious to know more European stories or Australian ones or just any other. Because the stigma is culturally and socially constructed too. The stigma is also quite new from my understanding because of the drugs that came on the market and it was easy to sort of demonise herpes, so that people will go and buy the drugs. Otherwise, there wasn’t even a test for it until the 80s I think. It just goes to show that a stigma of something is just very culturally constructed. R: Yeah, the stigma was created to commercialise herpes and I think it is essential to understand where the stigma comes from. In order to distinguish yourself from it. Once I understood that I helped me to process and to move away from the feelings created by the stigma. The only bad reaction I got so far was from a doctor in the US. I was travelling by that time. I think it was my second or third outbreak, so it was still very painful and new for me. I was laying on the table feeling vulnerable and he drops a line like “at least you had fun”. I was so shocked that I couldn’t even defend myself. I couldn’t believe that he would say something like that. I: Yes and also he doesn’t know anything about your background either. You know, what if you are a sexual assault victim or something and that’s how you got it. I don’t want to make any assumptions but it is so inappropriate. R: I think that comment from the doctor goes in the direction of slut shaming and showed me how strong the stigma was. He was basically saying to me that I slept around. It proves that even people who are supposed to help you are keeping the stigma alive and judge you. I just couldn’t believe it. I had no words. Can I ask you something else? Do you have any experience with HSV dating websites and what is your opinion about it? I: I haven’t joined any and actually, I stopped using Tinder a while ago now, not because of the diagnosis. It was a good way to find out that I don’t want to settle at all, I’m just happy to meet people. Now I don’t feel like meeting people but I will probably get it again when I can be bothered. Now, with HSV dating sites I really think they just keep that stigma alive – to be honest – as if like you can only really settle with someone who is also positive. It is also kind of capitalising and making money through that. Again, it is still reducing you
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down to that status. You are still that status and nothing else. I’m a PhD student, I’m an academic cheer, I’m also a research assistant as well, I have so many hobbies, I love readings, I have done burlesque, I have done a radio show and there are so many other things I do and I have got so many friends and all these things, so I’m not just a status. I feel like those dating sites still encourage that. There were comments on the support groups on Facebook, it hasn’t been great feedback. The only thing you got in common with these people is the condition and that’s it. There is more to it than that, you know, so I think my way to go about it and I work through so many scripts in my head about disclosing but I feel like I disclose if I know you are interested and then I have to tell you. I only had sex with one other person post diagnosis and I just said look “I have got cold sores not in the mouth but downstairs” and I did tell him “it is up to you if you really want to do it”. He wasn’t really shocked or anything but he was like “we don’t have to do anything if you don’t want to”. Which I thought was very considerate but I said: “Look I do want to, but I want to make sure you are actually okay with it”. So, we got on with it, no drama. He hasn’t reported an outbreak. When I was thinking about it, it was a way I just could prove that it was not going to be a big deal at the end. There is also this “you should be grateful he accepted you whatever” but that’s not the point, he was talking to me before that and he was already interested. Obviously, my status was not going to make too much of a difference either way and there is a lot of toxic narratives I think to do with sex and STIs. So we need to keep on learning. I realised I internalised so much of this, so it is still going to take me a long time still to completely unlearn it. People do appreciate the honesty I think and it also depends on how you phrase it. The script has to keep being reworked when you disclose. The best advice I read was if you believe that it is not a big deal than other people will follow that belief. I do remember last year, I had a sexual encounter with another guy. He had disclosed to me and I don’t think I caught it from him and I don’t think we got the same strain because we didn’t actually have intercourse anyway. But he said “alright, I actually do have herpes” and he told me all that and what medication he was taking and everything. He told me about his other sexual partners. And I just thought by that point I was 24, well this actually isn’t a big deal. If I was 19 I would have felt “oh my god” you know, cause I still was so naive about this. But I thought well, he is gorgeous and we were talking for a while before we went to my bedroom and I really do like him. This actually doesn’t matter and I thought the fact that he was so respectful and respectfully disclosed to me that he had it made me respect him even more. So it wasn’t this order, like this order of deceitfulness and then suddenly I got an outbreak. It was like over a year ago, so I don’t think it was from him and we didn’t have any genital to genital contact anyway. It just goes back to that you are more likely to get it from someone who doesn’t know at all. Which I think is something really important to make people aware of. But without the whole “it stops you from sex and abstinence aspect”. You could get it from anybody and I just don’t think it is helpful at all because people are still going to have sex whether you tell them to or not. And that’s why the US is a bit dysfunctional where there is more for abstinence only education. Especially, with higher rates of teen pregnancies and STIs and then people are being more isolated for no reason.
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I had to be very choosy about the support groups I was joining because if someone said “my life is ruined” it would upset me. So, what are you saying about me? Are you saying my life is ruined too? Staying away was probably more positive and of course, there can be that doubt there and asking for information, but the doom and gloom doesn’t help us at all. It sets us back. Especially since it is 2017, people are going to have sex and it’s just time to learn all of that and mostly it depends on how you disclose. I guess when it comes to the disclosure you need to work out the best way to disclose to somebody else, but I think the bottom line is coming down to respect and if someone is actually going to reject you on the basis of it than I feel like there are going to be other issues anyways and you filtered them out. Luckily, I haven’t been met with that yet because I haven’t been seeking it out. Okay, it would be great to be dating and sexually active, but I haven’t decided to make myself celibate but it’s just it hasn’t changed my approach to things at all cause it is very sporadic when I would have a sexual relationship anyway because I’m usually so busy. I don’t really have time for a relationship and I do like my own company a lot. That was probably something that helped. It made me realise my dating life hasn’t actually changed and I still had a sexual partner anyway. When you get first diagnosed you just don’t know what it can bring. I think taking it slowly and embracing the emotions how it is really making you feel that was probably like important steps towards healing. R: That’s a really healthy attitude and your are mentioning a lot of valid points. You add a lot of insights to this research. Even personally, I can learn a lot from this research because everyone has figured out another way to deal with their body and the mental issues. Thank you so much! I: It has been good to participate. I was also getting something out of this too because you know with certain things that happen in your life you got to be very picky to choose very particular who you disclose too. And I thought maybe helping out with this will help other people as well. And I’m slowly slowly doing that. I took me a month before I could tell my counsellor what has happened. It is only monthly appointments but then she said to me that she was grateful that I told her. I told her about Ella Dawson and all the information I got because she also has other students who are going through the same things. So it is good that she got some more information to pass on. She said that she is going to give that clinic a call because they should actually have counseling and “that was bad doctoring what you experienced”. I thought I didn’t know that there were supposed to be counsellors there but it was odd that there wasn’t any office for support there as well. The person still needs to live their life afterward despite it all. I don’t expect hand holding or anything but just a reassurance would have been fine. Just doing all these things, was really helpful to me and I was also thinking about the answers I was going to give as well and it kind of gave me some insights I found on the way too. I guess it is just that you can’t control how it is going to make you feel, so just keep educating yourself, don’t ever be in isolation, so I told a few close friends as well. A close friend of me tried to do kind of an STI joke and I had to call it out because I was like “look mate not on” because he was trying to make a cheap shot at
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this game called “never had I ever this sort of thing” and then he was asking me “oh, can I say this” and I said “no, not cool, don’t do it” and then I had to explain to him exactly why. “You have to realise this has been the butt of jokes for long and also you could have offended somebody else in the same room”. R: It’s great that you stood up for yourself and clarified the situation and not just sitting there in silence. I bet it took you a lot of courage. Every time I stood up it took a lot of courage but it was always worth it. I regret the times I didn’t stand up for myself. I still bothers me sometimes, especially that I couldn’t react to the comment of that US doctor. I: It was also only a month after I got diagnosed too and I mean he is one of my best friends. He is really really good to me but he can be a bit of a doofus sometimes. I said “look I understand that you were actually just a cheap shot but this still is really raw to me and you know it is also making me feel like my trauma and my experience was a joke”. And I had to make that very clear and also at the end of the day you don’t know you could have also offended somebody else. Why would we know, they are not going to tell us unless we are trying to have sex with them. Your status is your own business. You can tell people you trust and tell your sexual partners. Not everyone can be Ella Dawson. I’m still very much like I would like to start a blog but I’m not quite ready to do that I feel. Maybe in a years time, maybe less, I might be ready to do that, but at the moment I’m not. Other than that nobody else needs to know everyone else’s business either. You know when you are at work people don’t look at you and see “oh you are just the chick with herpes”, they see you as an employee. Which was helpful for me to realise that especially since I got really needy, I have been doing a lot of research assistant work and it is just like they see you as someone they are working with they don’t see you status. They don’t need to know it is none of their business and it made me realise that my status does not reduce my worth, I don’t have to lower my standards and the main thing is just to have a respectful dialog. Obviously, not to push people having sex with you that is up to them what they want to do. That’s why I kind of said “I’m happy to go with it, I just want to make sure you are okay sort of a thing” because the guy was obviously thinking that I might not want to do it, whatever. And I thought that is very considerate but I said “look, I’m, not worried about me I’m worried about if you want to do it”. I think it was important to sort of have that conversation to let him know that I’m happy to go ahead but I’m thinking about you too. R: It’s interesting to see what assumptions people make. I still love my sex life but herpes is still an additional barrier to break. It opened up my communication about sex in general. I think the sex talk has been easy to ignore for a lot of people. I have my standard and I have my value and I would regret if I would not be upfront with my sex partners about herpes. I have and I always will disclose that’s what I promised myself because I never had that choice myself. I don’t want to date someone who does not accept my standards and I think herpes pushed me in the direction to live up to my standards. It helped me to clarify up front and this was a positive aspect of the diagnosis which I didn’t think about before. I try to shift all the bad things to the good aspects of it. And I think embracing and accepting the
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emotions connected to it, is one of the main things that helps to get through it. If I have a bad day, that’s fine, it’s not the end of the world. Especially at the beginning when I had to cry so much, I could not pretend to be this happy person. I: Obviously, you don’t want to bottle it up and just pretend you are fine when you are not. I think it was important to really embrace how it was making me feel. Even though logically I know I’m feeling this way because of the cultural stigma, the outbreak got managed and I haven’t had another outbreak since but I still had to embrace how it was making me feel and as well as those other reactions. Something that made me sting a bit was, even taking a step back why I am feeling like this, I’m not going to pretend I’m okay just for somebody else’s peace of mind. And I felt like you know, I had to have those crying fits at the beginning and even in the last week, there was still a little bit of melancholy I guess. 25 with herpes “oh my god” you know, but then it is kind of like talking about it and discussing it with my friends because they are also being educated about it as well. It is being helpful in a way and I think there is this girl I’m also friends with now and she is in the States and this is through another online support group and I think one of the best things she said was like “oh I got a boyfriend not long after I got diagnosed”. Obviously, a relationship is not going to cure your herpes but she said “even before, but I still need to do sex work, my rights were not even, just because I had herpes or whatever” and I said “yeah, look it hasn’t really made a difference to my dating life, it is just that I don’t want to settle” and she said “and you don’t have to”. I don’t have to settle if I don’t want to, or there is not that fear of being alone forever. You just need to let these things run its course but hearing more positive stories and getting to know more people is really helpful. Even though, I’m not that active with the support groups, because it is also a secret one I have joined, but it is really good to like get the information and it is kind of exchanging information or even just saying “oh I had this good experience” or “I’m not feeling really well today, can I get some reassurance?”. There is a lot of misinformation out there and I think it is important that people get together and actually learn from one another. I think it is the isolation that drives the stigma and I mean there are not a lot of awareness campaigns, there is a lot for HIV and AIDS but there isn’t for herpes, not so much. And I think that is kind of why it is stigmatised the way it is because it drives of this isolation, it drives of people not talking to each other, it drives of the misinformation. You go onto google search and there is so much on going and it is overwhelming. Misinformation as well, you don’t even know what is accurate. So you need to be so discerning about it. I think that is kind of where I wanted to go with that. This girl I talked to in the support group I think there was mostly anger I was feeling, anger at myself, anger at the partner, anger a the medical profession and she was just like “you can be angry”. Sometimes there is that melancholy and just like it does get better because she has lived with it for a year. It helps to keep hearing that I think, but I guess there is this “I rather not have it at all or I never got it”. I think this is going back to embrace how this is going to make you feel, your emotions are not just something you can switch off. It is still very recent for me. I don’t want to isolate myself either but I knew that
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I wasn’t going to be totally fine when I got it. I was still kind of in a lot of pain and it wasn’t from the outbreak it was knowing that I have got it now. And there is no shame in feeling like that. My biggest fear was still feeling this awful and being isolated 20 years from now or after 20 years realising that it wasn’t a big deal after all. Cause I read all the testimonies, blogs and the support groups and I just thought “oh my god, 20 years is a long time, even a month is a long time” and a lot of these people would say “I wish I wasn’t so worked up about it” and I think that was probably what was helpful because it is like I don’t want to be in this for 20 years you know, because that is an awfully long time and there is a lot that can happen. So, I thought it was best to keep educating myself, cause I also did a mental health course for a different reason and this was months ago and trying to apply those exercises to my current condition as well. When I got my diagnosis I felt like I let my therapist down and everything. And she said that I didn’t let her down. I was glad. I don’t want to wait 20 years to feel better. I’m still at this stage where I only tell people if I have to. Being public about it, one of my fears is, because I see a lot of bad reactions Ella Dawson gets for example, and I think if you are a woman talking about sex and you identify as a feminist then you are going to get all of that stuff. Even when I was blogging, I was still private about it because you get so much stupid stuff and so many horrible things and a lot of them were not true anyway. I would read the comments that Ella Dawson would get and I just thought “I could not deal with this right now, you know”, maybe in a few years time, but right now I can’t deal with it. Even when someone would write nasty things on my Tumblr it is would still get me. Luckily, it was so few and far in between that it wasn’t a big deal, but I see if any online feminist is talking about anything at all, it is met with all of that. I think that would probably be one of my fears with a public profile and that’s why I do it when I’m ready to meet those consequences. This is the reaction I could be getting. At the moment I don’t feel ready. It might take some time before I would like to do that because I think it would be really helpful. Of course, you are going to have conservatives having a go at you. It is not the right time to have that public profile but I think that is just one of my fears generally. You can control how you want to maintain your presence I think but you can’t control how other people are going to react. So, I have to think if I am prepared to deal with those reactions right now. Okay, no I’m not. I don’t have to do anything for now. I’m still taking everything slowly with disclosing and it has been helpful to disclose but I still got to be mindful that not everyone I going to be totally understanding. Sometimes, I just couldn’t deal with a negative reaction and not even telling my grandmother, maybe one day I will, maybe next week, but I can’t guarantee that I’m might not ever tell her, you know. Because I’m very close with her and she knew that I have been sick, but she lives in another state. So, she didn’t exactly see what pain I was going through. I would just call her up and say “they put me on medication and it has made me very ill and it hasn’t been helping” and she has been wonderful and all of that. I was too scared to tell her the real reason because people don’t still understand it as well. Hiding doesn’t help at all, so you still need some kind of support and that’s why I told my closest friends. I think for anyone who has just been diagnosed just take it very slowly. I find that people go to the
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extreme where people would completely withdraw and isolate themselves and you just need to have some balance there. If telling this person negatively impacts my mental health, I won’t tell this person. I will tell someone else. I told my friend, who is always like a sister to me and I thought she has a right to know what is going on with me, so I told her. “It doesn’t change the way I think about you” was one of the first things she said to me. And that’s something that I needed to hear at the time because I was still feeling so vulnerable. Even now, logically I understand all the logistics and I understand that it is not a big deal and you just need to take it one step at the time, sometimes an emotion overwhelms me and sometimes I just can’t control that and I’m just being more accepting that I just can’t control how it is really making me feel and I just kind of have to embrace it. This was one of the most important things I had to learn as well. There will be days when the diagnosis will get to me. This whole scarlet H thing, that symbolism from “The Times Magazine” is just so unhelpful. I can’t switch this off right now, I just have to allow these feeling to happen and just have to take it slowly depending on what I have on that day, if I don’t have to do anything I just take a break. I already got anxiety and depression anyway so most people understand I just need to take time. Having other distractions is helpful too like I got really invested in reading again, it just has been helping me to forget about it. And also when I got really busy again with all this other research stuff, there are people who depend on me, that was a great distraction. It was also what helped with the healing process as well. People depend on me, so I can’t just sit there, they rely on me and it made me forget about that. When you are on your own thinking about it “oh my god” you know it can be very overwhelming especially if you don’t have somebody else around a lot. I mean I have got a housemate but I don’t tell her what is going on you know and I think my friends are wonderful but they have so many things themselves too. It’s about being patient with yourself was something that I had kind of come to grips with and it is very hard. I don’t want to be another doom and gloom narrative and I think that was probably my main motivation for seeking these things out. R: I think we have to see that it is work in progress. It’s step by step and it’s going up and down. That’s how I see it. I’m fine with that, I accept that it is work in progress and I helped me to not put more pressure on myself. It’s usually not other people pressuring me but it’s myself. It’s part of the journey. I think it’s lovely that you are saying that probably at one point you will ready to write a blog about it. Patience is a real factor and it takes sometimes longer than we expect. For me it was a journey to strengthen who I am and to define and embrace that. I think with the years it gives you strength to push through any challenge. I see dealing with herpes as a challenge, but I accepted it as that and it doesn’t bother me so much any more. Thank you for the talk, I know it can be really tough and also for your time. I: It is really good that you are doing this. There needs to be more positive research and there needs to be more education. R: Thank you very much for being open about your HSV experience and sharing your story.
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Appendix 6: Interview Script 3 July 3rd 2017, 3am, 90 minutes Gender: Female | Continent: North America | Age: 50 Timeframe of living with herpes: since 10 years old, (aware 3 years) | Type: HSV-1 (Oral) R = Researcher / I = Interviewee
R: Would you like to share your HSV story with me? I: It is kind of natural for me to be public about my herpes because I just have no shame. And I have no secrets. I don’t mind being the punching bag but what I found is that speaking publicly I have never been shamed. The only time I have been shamed is inside the secret private groups. It was herpes shaming. Shaming me for speaking out, shaming me for things like if I choose like not to sleep with muggles. I get a lot of crap for that you know and I’m like it is my personal choice. The only time if have ever even felt any adversity to having herpes is when I’m dealing with other people with herpes. I think people with herpes are our worst enemies and the reason the stigma stays alive is because of the people living with herpes. R: And it is because of the secrecy of living with it. It is like a circle going round and round as well as all this stuff that commercialises herpes and make money out of it. I’m shocked that no one ever shamed you publicly but people with herpes are the ones who have a bad reaction to it. From my experience, every time I spoke up and every time I disclosed to other people I have never had any bad reaction to it. I mean there are some people and I never heard from them again, which is their own choice but they didn’t say any bad word to me except my doctor but that’s a whole other story. I: And I’m the person, I talk about it at work, I talk about it on the bus when I ride to work with people and I don’t care who is listening. I have no shame because I have information that they don’t have. So I feel, I actually I have been to the secret private groups for two years now and I just left them all. Because I’m really dedicated to ending the stigma and I feel like being in the secret, private groups just perpetuate the stigma. It is kind of hypocritical for me to be hiding in the secret, private group. So now, I’m just in closed or public groups. Not to mention, I just haven’t got a good feel for the herpes community you know. I speak out a lot so that automatically puts me in a position where people are like “this crazy chick” you know. I made some friends but it just hasn’t been the most positive experience to be in those secret and private groups. And it holds me back from what I really want to do, so I just left them all. R: I think the groups are really good at the beginning because I really needed to feel like I’m not alone. I grew up in a country with 36’000 people it is basically that you know most of them. So everyone knows you and no one ever talks about any of these topics. It is just like
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well this doesn’t happen in this country, right. That was really tough and when I found one of these groups and then I met Nathalie* when I went traveling in the US and that really helped me to meet people from these groups and have a face to face conversation with them. So, it felt real to me. I’m active in the groups again for the research and to include myself again and to fully understand the whole complexity of it. Besides that, I wasn’t really active the last year, because I needed kind of a break from it and the point where you are at that you can say I speak about wherever I am, that’s the point that I want to reach. I still have a couple of steps to get there. I disclosed to many friends at the very beginning but I still have some people on the list who I want to tell in person. I saw that you posted about this interview today on my Facebook wall and I’m sorry I haven’t approved it yet, I just wanted to say it’s amazing and I really appreciate it but I cannot put it out there right now. I’m going home next week and I want to tell these people in person. I: I apologise. That’s one of my problems, I forget that not everybody else is like me and with my page that I’m on it is only H people. Sometimes I forget that other people don’t have an H only page. And I made that page, I have three Facebook pages, I post of all of them. One is just for friends and family, one is my activism and my political justice work and one is H only. I made that page only to protect my H friends because if they were on my normal page they would end up outing themselves. So I made that page just for H people so that they can talk and they don’t have to worry about who can see it. And when I tag people I forget that other people don’t have an H only page. I was trying to promote you. I thought if I tag you someone else will see it and they will do the interview with you. R: No worries, it is fine. I’m claiming to fight the stigma, but I’m not there yet. I know your intentions were good. I totally understand, thank you for that. I just wanted to mention it that you don’t feel like “she wants to be public about herpes but now she is making a big fuss out of it”. I: Something I found interesting because I do a lot of support and education with herpes. There is just so little support internationally. So many people I met from the UK or Australia or anywhere else “I’m sure you have a Facebook group there, right” and the answer is “no”. No Facebook groups here for herpes, so we have so many international people that join our groups even up in Canada. We have a lot of people in Canada that join our Facebook groups because there is nothing like that internationally in these other countries. R: I lived in Zurich when I got diagnosed and in Switzerland, I couldn’t find anything. Even when I was searching for information about herpes in German I couldn’t find many valid sources. So I started to search in English and I found the group from Nathalie* and I connected with her and I finally got to meet that group in Washington D.C. which was amazing for me. But I had no one around me with in a couple of hours that I could somehow reach. Even now, it is hard to find a group in the UK. I just found a group one week ago. So, I’m trying to get connected with them. The secret groups are even hard to find for people living with herpes. From my experience, I jump from one person to another person to finally get
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to where I’m supposed to be. It is quite tough to access some information that would be quite important especially at the beginning. It was a journey of education and a journey of finding things. I confronted myself with this stuff and I found that the more I know about it the better I can deal with it because I actually understand what is going on. I: The “Project Accept”, I’m an admin in that group with Nathalie* and it is a closed group so that you can search for it. On the “Project Accept” website there is a link where you can find the way into the group, so we have ways into the groups but yes for a lot of people they are very hard. I’m starting to find a lot more closed groups on Facebook which is great because then you can search and they can join and from there they can find the other groups. I used to recruit of “Positive Singles” the dating website anytime I would talk to somebody up there I would say “hey do you know about the groups” and I would add people all the time. Based on my experiences in the groups I just kind of stopped doing that. Partly, because they are grateful people who are newly diagnosed and I think the further along you come with acceptance of having it and if you have a good self-esteem and a good self-image you have less need for it. And I started finding more and more people on “Positive Single” who would say “I know about the groups, but I don’t need them”. I think the people in the groups are used to think well this is where everybody is and there are a few out there who don’t know about it yet. When the reality is that the majority of people don’t use any kind of support and they are not in any kind of groups on Facebook because they found their own way to live with herpes and not have it to be such a thing that they need the social connection and they need these social groups. They have learned to come to a point where they just navigate it and it is just not that big of a deal that they want to be part of some secret society or that they need some kind of support for it. In the international community, it really feels like internationally they are saying not only do we believe the stigma and this is a terrible thing but this is so bad you don’t even talk about it. Which is just mind boggling. R: Last week, when I disclosed to a friend, I found out that this friend has it too, but that was the first person from my personal network that actually knew about it. I got a lot of reaction like “I never even thought of talking about or getting tested for STIs”. People tend to ignore it completely. I was surprised. I was always a really responsible person and always had safer sex. So most people are not even aware that this can happen even if you have safer sex. I educated my environment about it. I used the online groups most not for the mental stuff but I used it at the beginning to get some tricks how to deal with the outbreaks. I had really bad outbreaks at the beginning and after two years I’m really good with managing it and it is not such a big deal anymore. Everyone has their own way to figure out what works best for them so it is kind of an experiment. I read about what do other people do and so I found my own way to deal with it and that’s how I used the groups. I didn’t use it for social meet ups because everyone was too far away anyway. I: I have also noticed, especially in my local Washington group it’s like there are 900 people in the group but there are probably like 40 to 50 that are really really active and they have
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events all the time. So they go to the events together and they hang out. I just feel to me that some people with the diagnosis just become part of this secret society and they really...I mean, do you have friends that don’t have herpes? Because they only do things with people in the groups and the people in the groups become their whole family. And I’m like “I don’t have time to go to the herpes events, I have a lot of friends and a lot of family”. But it seems like some people isolate themselves and they don’t even have friends that don’t have herpes because they don’t want to have the conversation. I don’t know, I try to understand it. I notice it but I never asked about it, because if I ask those questions like you know when I see this...I’m a researcher, I went to graduate school and I see these things and I have questions. I’m a critical theorist, but if I pose those questions I get opposition. So, there are just a lot of things I notice like that. The group becomes their life. R: I think we need this kind of critical thinker to make people aware and to make them think about it. Like you said, I don’t feel connected to a person just because we have the same condition. Either we have a personal connection and I really like that person as it is or I don’t. I think it is healthy and good to talk to people who are not directly affected by the stigma to tell them about it and to make them think. The way I dealt with it, I talked to my friends and that helped me a lot, even though they probably didn’t understand everything I went through. They were great support and they always encourage me. I’m a designer and I’m curious and I research about things. I want to know “how does it work? why is it that? why do you do this?”. For me, that is a normal way to deal with stuff. I totally understand your way of asking questions and I think we need this kind of people because we cannot just say “yes” to everything, we have to understand why it works a certain way and how we can actually change something. Many people who are only in the circle and are only talking to other H people, some of them are probably not even aware that they keep the stigma alive themselves. It is a vulnerable topic and I understand that not everyone has a strong relationship or friends that can hold them and make them strong enough to talk about it – I get that. Everyone has another history and another environment and it is different people with diverse stories. I: There is also a divide in the herpes community: There is oral and there is genital. So when I talk about how open and public I am... I’m so public about it so much on my friends and family page but people know that I’m a social activist and they know that I have been out there fighting. That’s just me. When somebody gets cancer it is very likely they become an advocate for cancer and they do the runs and they promote advocacy and they educate. They just kind of feel like “I survived cancer so now I need to help others”, but this doesn’t happen with herpes. I feel like I have it and it’s my duty to tell my children about it and tell my family about it and do everything I can to educate them and keep them safe. It’s like I have an obligation like a cancer survivor does, but within the community, people forget between the oral and the genital even they believe the stigma around it. People will say you know what “this is my private business with my genitals” and “I only have to tell people who I’m going to have sex with”. Well, that’s not true for me, I have oral, I have to tell
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anybody that might try to kiss me. So, if I go out with friends and we are having drinks and somebody will give me a goodnight kiss that is as dangerous for me as somebody having unprotected sex. R: Especially with the oral because I have HSV-1 but I get genital outbreaks. I believe I got it from oral sex. Even this kind of connection now is all mixed up and people are definitely not aware of that in many ways. I: Yeah, so they forget that this isn’t your personal private business. I put people at risk, anybody you know that would come up and give me a kiss. I have to tell them. But people are like “oh but you have oral, you’re different”. “No, I’m not different, it is the same thing and it is just a different location”. Don’t assume that because you have 1 that it came from orally, you can have 1 or 2 either place. So you could have got it from someone you had sex with who had genital 1. See my story is that I have been getting cold sore since I was ten years old and there are six children in my family. Three of us get cold sores and three of us don’t. The two younger ones that don’t were born around this time and the one sister lived with her dad most of the time. So the other three of us who get it were all in the home at the same time. So the assumption is whether it was my mom or a relative that we got cold sores from them. I have had it since I was ten, so there is something I have always grown up with. And even myself kind of believed the stigma that “oh that are the other herpes, oral herpes, it is not really the same thing”. But I remember been very ashamed growing up, I mean I even got to a point where I put starter fluid from a car on a towel and dab my cold sores to try to dry them up. I would hate to go to school. I missed work. I would get them so bad that I would not even go to the grocery store. So I grew up with a lot of shame around it but I never thought of them as the other herpes. And even though you hear things, even society tell you “oh well that’s not the same as the other herpes”. So, I go through my whole life with cold sores and every time I met a new guy, we kiss, make out and everything and most of the time I would not even talk about my cold sore until I got one. So I could have been dating the guy three or four months and then say “oh crap I’m getting the cold sore I can’t kiss you”. Never ever would a guy say “oh you have cold sore, I can’t be with you”. I was just always that’s how my whole life was. As far as I knew I never passed it to anybody. None of my partner I have ever been with came out with cold sores and then about four years ago I was married to a younger guy. He knew I had cold sores but when we first got together – previous to him I have dated a couple, a husband and wife. And ten month after dating them the girl calls me and says “hey, I had a herpes outbreak and I think it came from you”. And I was like “really, why?” and she was like “you are the only person we have been with and you get cold sores and I talked to my doctor and he thinks it came from you”. And I went, I have heard about that but I never really believe that and I felt really bad and I said “I’m so sorry” and she says “I don’t blame you, it’s okay”. Well later down the road she found out that her husband hand cheated on her. And maybe it didn’t come from me and that was the trigger that got me to start doing research. At the same time, I was just with my husband and I tell hi “listen, I have cold sores” and he is like
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“yeah you told me that” and I said “but my ex-girlfriend from a year ago had an outbreak and she think it might came from me”. I said “I don’t know if it did or not but you probably shouldn’t be with me until I figured this out”. He says “No I love you and I want to be with you”. So we were together for about three years and all of a sudden he had a terrible outbreak and it lasted like a month and it was all over. He didn’t go to the doctor, but I could see it was herpes. And then I was like “oh crap I did pass my cold sore to somebody the first time” and that’s when I really started to do research and that’s when I joined the herpes community and that when I came to the realisation that I’m exactly like all these people with genital. It is the exact same thing other than a few proteins, it’s just in a different location. So I am just at the same risk as they are of passing it. My husband has been cheating on me so there is no guarantee that it came from my oral, so that’s now two people I could have passed it to, but I probably didn’t. But that was what incited me and I started doing the research. My ex husband is one of those people who had one outbreak and never had another one and he says that he went and got tested and he came back negative. And I’m like “it’s a false negative you have herpes” but he lives in denial. He lives in denial so “it is probably something else”. I’m like “I have seen it, you have herpes”. Right after we got divorced for like a year I had this guilt that it was my responsibility that if he wasn’t going to tell people that he has herpes and I knew and I didn’t say anything that I was just as guilty as him. So for a year, I was in a group struggling with that and trying to figure out and maybe that’s why I needed the groups cause I needed to learn that information. I was struggling with “is mine the same as genital? Could I have spread it to these people? Do I really have a place in this community or can I still pretend I’m just cold sore girl?” and dealing with the guilt of “he is out sleeping with people and not telling them. I know, so if they get it I’m just as guilty as him. I think that’s really what I used the groups for the first year to process all that. And to this day, I haven’t had a genital outbreak but for the last three years, I have only been having sex with people who are H positive. At this point I kind of figure out I have both and probably just asymptomatic below. Everyone is like “you should go and get a test and figure out if you have 1 or 2”. I’m like “at this point it doesn’t really matter”. I’m part of this community, I only have sexual relations with other people who are positive. So if I don’t, I’m bound to get it and it doesn’t really matter. It really doesn’t, the location and type don’t matter. The fact is I have herpes and I need to live my life as if I have both. And that’s how I need keep and be safe. So thats kind of like been my processes. I have had it since I was ten, but I never really acknowledge it as truly being herpes until the last three years. As soon as I came to the realisation “whole crap my cold sores are exactly like genital” that’s when I busted out of the closet and said “hey guys, did you know this? Look and listen to what I’m learning”. From the second I knew, I took ownership and I came out to everybody because that’s just my personality. My story is, I always had it, it was always part of my life, two of my siblings have it and I joke with my mom “you probably gave me herpes mom, thanks a lot”. The only time I had shame is having to go to school or having to go to work and having an outbreak. But I don’t take any antivirals know because I just became so good at knowing the triggers that give me a cold sore and I’m so good at being able to put
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that tea tree on it the second it tingles that it just really isn’t that big of an issue anymore. I really know that it was big pharma that created the stigma, so I have the information not be ashamed. I’m a social justice advocate so my thing is “big pharma, they are to blame, they are the ones who did this to us, now we need to take back ownership and not let them shame us anymore”. That’s kind of like my story. R: If we don’t know where it all comes from and if we don’t understand what is going on, we cannot do anything about it. That’s why I educated myself because I felt it is good to know what is going on. Once you know big pharma created this to sell their drugs, it helps to not be ashamed and to decide that this is not that bad and talk about. I think when you said that you have been living with it for a long time but then it takes some time to be aware of it and I think many people even go that far to get the information. I think most people just ignore it and just pretend it is not there. I: Well you know big pharma didn’t just create a stigma. Big pharma really caused a lot of harm to society because when they create that stigma they create it so that people with the genital would buy their antivirals but at the same time, they did distinguish between the two and made people believe that cold sores are not the same thing. So everybody with cold sores continued to spread it at a rapid rate because big pharma made them believe that this isn’t the same as genital so you people go ahead and keep doing what you are doing. Only the people with genital need the antiviral, so they really helped to spread herpes. They were dishonest, cause I was one of these people “oh big pharma says that you need antivirals for genital but you don’t need them for cold sores because they are not the same thing”. 75% of new genital cases are HSV-1, they are coming from people with oral. So it’s the people with oral that think it is not so bad, that are spreading the herpes everywhere. When people get genital they start to take precautions and they start taking antivirals and they stop sleeping with people without telling them. All these people with cold sores because of what big pharma taught them they are just out there taking no precautions. They are spreading it the most. So big pharma did in the process of creating business for themselves, they cause so much harm by distinguishing the two and making people think that cold sores aren’t the same thing and that they don’t need antivirals and it’s not a big deal. They are monsters. R: Oh my god, I was not aware of that aspect, but know that you are saying it, it makes total sense. It is crazy. I: I think that without a cure or vaccine there is absolutely no way to stop the spread of this because the majority of people who have herpes got it before they were ten years old from a relative kissing them. You tell a parent not to kiss their child. Just imagine that, when my grandson, he is three years old and comes up to give me a kiss, could you imagine me saying “no, I can’t kiss you”. Can you imagine the psychological damage to a child’s developing brain when their parent won’t kiss them, you know. Parents are not going to stop kissing their children, they are just not. So there is no way to really stop the spread of it. It is really
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about finding a vaccine or a cure for it. And in the meantime trying to relieve the stigma so people don’t have so much psychological damage due to the diagnosis. That’s kind of where I stand with it and that’s why I’m really pushing to end the stigma because there is really nothing that I can do to find a cure right now. That’s ten or twenty years down the road so there is not really anything I can do, I’m not a scientist, I’m not part of a study, so in the next ten or twenty years, the best work for HSV is to end the stigma and offer some relief to those people who are severely depressed. I talk to people that really think about killing themselves. I talk to a boy in Sweden that I just met on “Positive Singles” and he can’t tell anybody, he won’t go to a doctor and he is asking me all these questions and he thinks about killing himself. And I’m like “give me your e-mail, we are going to talk, I have support for you, don’t even consider that”. And I just think that is just so irresponsible of the center for disease control and the big pharma that there are people out there with severe problems because of herpes. They don’t need to be. R: Yes, it is misleading information. It definitely leads to more mental health issues in general and like you said it can go as far as suicide which is unbelievable. I: Big pharma is the devil in all this but it’s greed and money at the expense of human lives and you know people suffering. But they present it as “oh we are the heroes because we came out with antiviral and we just wanted to make sure people knew about this”. R: The thing is even with the antiviral, I’m not taking them anymore. I took some at the beginning but they just made me tired. My first outbreak lasted for two weeks and it was really painful, I couldn’t walk and I could really sleep. After some time, I realised that if I take the antivirals every day it just made so tired and actually feel sick. I felt sick because I had to take medicine that took away all my energy. I decided that I cannot take this medicine forever, I just can’t. I feel much better since I decided not to take it anymore. I cannot really control what the medicine does to my body. As far as my life goes, I’m not taking any medicine that I don’t really need in order to survive. Now I feel I have more control over my body and I’m relieved that I made that decision. I: Daily doses, people take medicine if they are sick. So to have to take that everyday, is the same as you are sick. So it is not even the communication and the message sent from society, but there is even a dialog through the medication. The medication can’t speak but there is an inner dialog that goes on there, associating yourself with the medication and being sick. So it’s not even the verbal communication but there is also the non-verbal communication element too around it. Even taking the medication perpetuates the stigma because it says “you’re sick, there is something wrong with you and you need medication to make it better”. I find that the majority of people don’t take their medicine, they only take it if they have an outbreak or if they are going to have sex with someone who doesn’t have HSV. I have a bunch and I don’t take it because I have learned that I just can’t eat pineapple, which is one of my favorite things in the world. And sometimes, I don’t care, I eat pineapple knowing that I will probably get an outbreak but it’s worth it. So I know what my triggers
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are, but I keep a bunch because like I said I used to admin a local group and that I’m still on “Positive Singles” so I meet people and I have a friend who is in the military and he will not go to a military doctor because he is afraid that once he goes there the whole military is going to know, so I will give him some of my medication sometimes. I don’t really need it, but I like to have it around because of other people who are afraid of going and get it. I tell him like “most of the people in the military have it, go to the doctor, he sees cases every day”. He doesn’t want that on his medical record. R: So the stigma is even preventing people from getting treatment. I: Yes, they won’t even go to the doctor because they are too ashamed. This boy in Sweden that I’m talking to, I told him “go to the doctor” and he says “I can’t”. So I said, “well then do a mail ordered test and here is how you do that”. So I sent him some links of where they sent you the stuff and you send them the blood so that you can do it that way. It just breaks my heart because I guess I never went through what you went through. I never went through what a lot of people went through which was having a genital outbreak, having it be really painful and associating it with something I did sexually. For me, my cold sores were because my mom kissed me and I can never have shame in that. I can never allow myself to feel ashamed because my mother loved me. I’m lucky that my mother loved and kissed me. So, I have never had to go through that, so it is hard for me to understand that but I try to offer the support. I never had that part of the stigma where I’m a sexual deviant and my sexual behavior... this is my punishment for my sexual behavior... I never kind of had that mindset. So that may be something that makes it easier for me to speak out, it also is easier for me to speak out because when I do I talk about “I get cold sores”. Most people are like “Oh yeah, so do I” or “so does my cousin”. I’m like “yes but did you know” and then I explain the genital part of it but I’m never taking ownership of saying “I have genital” because I never had an outbreak. But I tell them that I most likely do, but it doesn’t change anything. So I understand that I haven’t had to deal with the sexual stigma as much, but I also hear people say “oh well you’re lucky you only have 1, you don’t have the same stigma attached to you”. Well, the difference is that with 1 you can’t hide it. I can’t be secret, it’s like a badge, my Scarlet letter, the whole world sees it when I have it. Granted, they don’t look as negatively towards me, the fact it that I can’t put on my pants and go to work and pretend like it is not happening. It’s not a secret. R: Being able to hide the genital herpes has a good and bad side. It’s really bad that people can hide it and pretend it is nothing in order to not having to deal with it. My experience was, not talking about it and pretending everything is fine when I actually feel like I want to communicate it and tell people what is going on, the hiding was more a burden than living with herpes. The hiding part is unbearable even though speaking about it is tough and risky and all this kind of things but for me, it is not an option anymore. I was two weeks off work when I got first diagnosed. I think going to work after that and not being able to explain what happened or why I had a sick leave was terrible. So, people around me knew something is going on but I was not ready to talk about it and I didn’t know how
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to deal with it. Now that I’m ready to talk about it, I can see a different perspective, I talk about living with it and accepting it because I already have that experience now. It was just the worst two weeks of my life and it was really painful. Now, I’m processing all these kind of things and I’m done with the hiding part and I feel relieved every time I can disclose to someone. Even with the people I met in the UK, I didn’t tell them in the first conversation we had, but now I feel ready to tell and it has been amazing so far. I: Doesn’t it feel empowering? R: Yes, and people are actually interested and they are asking me stuff. Yesterday someone said to me “I have been living with oral and I was so ashamed”. It really helps other people opening up about it and it was just such an amazing evening. The more I practice and talk about it the better I can deal with it because it is not a secret – it’s not the dirty secret anymore. Personally, that’s what I needed to work on. I know I’m the only person who can actually heal myself, so I just need to do what I feel is the right thing to do. I: It’s so empowering but again it’s my ego that I forget that not everybody is like that. I feel like I have this secret “you guys if you just talk about you feel empowered, it doesn’t own you anymore, the shame just lifts from you”. I already had respect and admiration from people in my community, I have been a political activist for a long time, I have been in the news, I have been in the paper, I used to run a community radio station, I helped legalise Marijuana, so I already had a lot of peer support and respect. My family has always seen me as the fighter who fights for justice, so for me, the only thing I got for speaking out is respect and admiration. So many friends say “I respect you so much, I’m so proud of you, I tell my friends about you and I think it is so cool that you talk about this”. I forget that internationally it is not that easy and for some people, they do have an ignorant family especially I don’t mean the stereotype, but certain parts of our country are very judgemental and I forget. There are some people who when they would talk about it even their own family would make fun of them and shame them. I forget about that, my ego forgets about that because in my world they only response I ever get is respect and admiration. If I’m out on the bus or if I’m in a bar or if I’m anywhere and I hear somebody make a herpes joke, I will walk across the room to call them out. I will make a scene and I will make them feel like an ass. By the time I walk away from that table they will feel really stupid and someone is talking to me outside and says “hey where can I get more information about that”. The majority of the people you talk to either have it or they know somebody who has it or they have been with somebody who has it. It’s hard for me to forget sometimes that it is not going to be for everybody the way it has been for me. I have to keep reminding myself that for some people it would be a terrible thing for them to be public and that’s why I want to fight harder to end the stigma so it doesn’t have to be that way. R: I also believe for everyone, it takes a different amount of time until they can even be comfortable talking about herpes. I think I’m really happy that I found people who are willing to talk to me about it. It has been such a great journey and you are the third person
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I’m talking to. I only know my last two years, I only know my perspective and like you said you only your perspective and once you start talking to other people you gain more understanding and knowledge what other people are going through. I think I can have a voice but I don’t want to tell only my stories, I want to show different views and perspectives. I want to tell the story of many different people. I want to understand all the different aspects and create value. There are many other people and they are in many different situations. When I went to the US there was this girl and she was sixteen and newly diagnosed. I almost needed to cry at the meet up because of her, not because I have to live with herpes. Seeing these people feeling so helpless really touched me. That was also a situation when I realised I want to help people. I want to be a role model like you. It helps to see what you are doing and to look up to. I want to show people that it is possible to get to that point where you can be a role model and your life is not influenced by Herpes in a negative way. If I could clone you I would definitely do it. I: I don’t want to say it is a calling but I definitely feel it is my responsibility because of the position I have. I already established a level of respect and admiration from people in the community. I’m the kind of person that has been a fighter since I was a kid and I have been an advocate and I fight for justice. I feel even more of a responsibility because I’m in a position so many aren’t in. So I feel I have to speak even louder because there are so many who can’t speak at all. If I’m not being shamed for it then I should keep speaking louder and louder. I think before I forget, another thing: There are so many things to the communication and the stigma and how people communicate. I want to point out something else I have noticed and recently talked about it in the groups before I left them. It is this phenomenon that so many people are in secret private groups so they believe the stigma and they have to be part of this community, but when people disclose to new partners, I find that a lot of them down play it. “It’s really not that big of a deal, I only get an outbreak like once a year, you know everybody has it” and they downplay it even though they feel like they need to live in a secret group. So I remind them when you disclose to a new partner you have can’t just tell them your perspective and how it has been for you. You need to give them the worst case scenario and the best case scenario. You need to tell them that the majority of people who have it never have an outbreak and it never affects their life but they can spread it through shedding. You need to tell them that there are people who get it so severely they can’t get out of bed. They have to sit in a bathtub for hours, they are in so much pain they can’t go to work. You need to tell them that because just because it is not bad for you that doesn’t mean it will not be bad for someone else. You can pass it on to somebody and they could get it very severely and it could impact their lives forever. So for you to disclose and say “oh it’s not that big of a deal, go ahead” and say that you told him, he took the risk and that’s his problem is not fair. Did you give him all the information for him to make an informed decision? That’s why I choose not to sleep with people who are muggles or say that they don’t have HSV. I’m not going to make them go get tested because I don’t want forever be that person who made them go get tested and they found out they have
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HSV and therefore I’m connected to them this way forever and that’s as bad as being the one who gave it to them. I don’t want to pass it on to somebody and have them be one of those people who have a terrible time with it. So it is wired that these people are in a secret group so they have shame around it but when their ego gets involved and they want to date this person they downplay it to them as not that big of a deal. But they are in a secret group so it is that big of a deal. That’s another wired phenomena with the whole communicating it to other people and how you own it yourself. That’s something I kind of thought about a lot lately. Don’t downplay it. Tell them the worse case scenario or you are not really being honest with them and letting them make an informed decision about the risk. R: What I thought is also like if I’m deciding to go public about it, it is kind of find the balance between I’m accepting it and I have a good life living with it but also telling them I also struggled a lot and it was a painful experience to get to the point where I am right now. It is two kind of levels and I can not just talk about the struggle and I can not just talk about my acceptance. It is important to show both sides. I had times I was ashamed, I couldn’t talk about it, I struggled a lot, I cried about it for months and all these things. I cannot just pretend because I accept it now that there was never a time when I didn’t feel this way about herpes. I was the experience and the pain that led me to the part of the acceptance, I went through all these steps. The stigma made me suffer and now I’m there and I really want to make an impact. I also want to research what kind of language I can use to destigmatise herpes because even in the documentation part it is hard not to keep the Stigma alive. I used language which supports the Stigma, even though I want to avoid that. Do you have any experience with that? I: No, I have a background in critical rhetorical analysis so I always think about rhetoric and the word I use. Rhetoric is being persuasive, so I’m always thinking about how to be persuasive to educate and inform but not scare but also comfort. I think there is the idea that there is some cognitive dissonance where we go against anything we believe in. That’s kind of the political climate right now, people who are supporting Trump even though he doesn’t stand for anything they stand for, so I think there is some cognitive dissonance in the sense that even though the stigma says it is all bad, bad, bad but then people... going against what they believe in. I don’t know any actual theories or any language but I know that rhetoric is a huge part of the conversation and it is a huge part of the stigma. It’s rhetoric in both ways, it rhetoric to try to persuade people that it is no big deal while you also have to use rhetoric to impress what a big deal it is. It’s a very fine line. R: I’m currently working on my story. I want to give it to as many people as I can to read through it. I need someone from the outside to read it, also people who don’t have herpes, to give me feedback. I want to know what kind of impression they get and I would like them to tell me if the language is okay or where I describe stuff too complicated or not accurate. I: Can I read your story? I will read it. I have different lenses than a lot of people. Some-
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thing else that I wanted to tell you. My daughter is twenty-six years old, so for years I have been talking about Herpes and educating to the point where my friends and family are like “ok, we get it”. My daughter ended up about six months ago, she went in and got tested and she came back positive for HSV-1 and she came home “I have 1” and I said “Oh yes, you probably got it from me” and she said, “Yeah, that’s cool”. She has no desire to join the groups, she has no desire to be part of the community and it just didn’t faze her because I educated her. Before she got her diagnosis she already knew “Oh my mom deals with this it is no big deal”. She also knows that a lot of doctors don’t have the current information so she made no effort to even talk to her doctor about it. She was like “alright cool I will go home and talk to my mom”. That’s a great result of being public about it, normalising it and getting rid of that stigma so that newly diagnosed people don’t go through the trauma. We can lessen the trauma for others by trying to normalise it before these people have to deal with their initial diagnosis. I would love to read your story. It helps me in educating and support other people because it reminds me to remove my ego and remember that there are so many other stories out there. Since I do talk to other people internationally, it will help me to get a better grip on what it is like to be outside of the United States and have herpes. Because there isn’t the information and support there at all. It’s good for me to hear those stories because it helps me to be better at supporting people. R: Thank you very much for being open about your HSV experience and sharing your story. *name changed for privacy reasons
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Appendix 7: Interview Script 4 August 10th 2017, 5pm, 60 minutes Gender: Male | Continent: United Kingdom | Age: 26 Timeframe of living with herpes: 2 years | Type: Unknown (Genitals) R = Researcher / I = Interviewee
R: I can tell you about the project again and then I tell you about me and my experience. After that, you can share whatever you feel comfortable with. I: Of course. R: I have been interviewing people, I told them when I got diagnosed with herpes and what has happened from then on till now and after that, we can switch and the interviewee would tell me their story. What I am basically doing, I want to find as many insights as I can to capture them in my master dissertation. So I want to add these stories to the literature that is already there, but it is kind of tough to find people who are willing to talk to about their diagnosis. I: It is one of the diseases where people make fun of it like you see in film and tv shows. It’s the butt of a joke. Obviously, this whole thing with Usher and what was in the news recently how he got herpes and it all came out... and the internet comments you see, people make all these horrible comments about it. It kind of sucks but it’s not being portrayed in a good light, if you know what I mean. There are some people out there, I read the comments and the people kind of stick up. They make the point where they mention facts. Two or three people said “2/3 of the world population have herpes”. They try to make it sound like it is not a bad thing which in my sight herpes is not really a bad thing. We all carry the gene, it’s just if it gets triggered, it partly scares the hell out. So these people say, “so many people have it and it’s not really a bad thing” and the comments back to them, they are quite vindictive and are just really hurtful. They are just not going past the stigma unless it becomes publicly acceptable that people have it. When I got first diagnosed, it was two or three years ago. Two and I felt like shit. I got it from a girl I used to see. I’m 26 now, so back when I was 24. When I was 19, I used to see a girl casually. We meet up and have sex and then we stopped doing that after a year. So I’m now 20 and she got a boyfriend, had a child and started a family. That didn’t work out so they split up and then she kind of got back and talked to me. It kind of got like not to where we were before, but we met up a few times and it kind of happened again. And then one day I was feeling the pain and I was like you don’t think of it… I wonder what that could be. So I bumped into our local clinic. It was not painful like excruciating pain, it was like annoying pain. I went to the clinic and she did an inspection and I was like “what’s it?”. And it was just a little bump which was there like the day before. So on the day, I went to the clinic I had an outbreak. My first one, the most painful one. And then she said “it is herpes but we will take some tests anyway and will get
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back to you”. So I kind of had it in my mind. It’s like a shameful thing, I felt horrible and I really hated myself. So I got in touch with the girl “I just went to the clinic and this has flared up on me”. And she said “yes my boyfriend gave it to me”. So she already knew that she had it and she openly didn’t say when I carried on having sex with her. She didn’t tell me about it and didn’t think it was a big problem. You know, you can’t do that. That’s not fair. So, I cut all ties, I kind of like just went “I don’t want to talk to you”, “I don’t want to know you”. Get on with my life and then for the next six month, or the next three months I was really self-hatred, I was really down in the dumps. I thought “I will never find anyone”, “I’m never going to be with anyone”, “no one will sleep with someone who has herpes”, you know that type of thing. So, I just didn’t tell anyone, I didn’t tell anyone that I had it. Kept it really minimal. I started looking at support groups online and I found one, I can’t remember the name. They kind of helped me to go through a little bit, cause it was kind of like support group XY* in a way, but not. It was not through Facebook, it was just its own internet. So, I kinda got a bit of a positive feeling from that and then I found the dating app “Positive Singles” where a lot of people meet each other. I saw a few people from there. I went out on dates, we talked about it quite a bit, with the people I met. I kind of learned a little bit more about it. And then one of the people I did meet from there, she got me into the support group XY* and from then....so the first time, I was added twice. The first time, it didn’t work. I wasn’t ready because they were so open about it, laughing and joking about it and they saw it in their own positive light. Some people didn’t and some people do, I just wasn’t comfortable. I was still working on accepting that I had it if you know what I mean. So, it freaked me out and I was really uncomfortable. I left the group and reintroduced myself back into a shell. And I carried on and carried on. And then my life changed as in outside, my actual life, my working life,... not for worse. I got let go from one job and then I just kept on working other jobs to keep the flow. So, it was like my old job was a part of me being quite depressed as well. I hated myself because it was not a good job to be in. As soon as I left there, I felt kind of a release, you know. Like I could be a new person. I felt confident with myself, I got this new job where I work as a gardener, it was something completely different and I felt positive about it. So, I did that and I got asked to go back into the support group XY* to give it another go and so I did. I kind of went in without being...with a mindset not being freaked out, just like take it as what it is. And since then, I got a new job, it’s a job I never thought I would get, it’s perfect, so it affects all of it. I have a really positive mind frame now as a year and a half ago, I was like just for once I shut everyone off and I talked to no one about it. It has made me feel more open about it. There have been times where I met someone, who I don’t know who has it, and at a night out we exchange numbers, you text each other, you see each other whereas before I would not do that because of I know I’ve got it and I don’t want to pass it on to someone who doesn’t have it unless they are willing to take that change. So I was not willing to go there, but now I will happily talk to someone and if we would be together “this is what I have and it’s up to you if you want to take this on as part of your life or not” and a few times it hasn’t worked out. All the time, it has not worked out up on “I don’t really want it”. Which is fair enough, nobody wants it.
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So carry on, but I don’t let it bother me. I know that inside I’m feeling positive about it, I feeling happy, you know. So, a lot down to the group is on that, talk to people, hear their stories and obviously if you got into the group people put their issues up there. Reading through it, there are people dealing with worse than I have because people have different types of outbreaks. I just have little bumps. So people have rashes on their legs, like really severe. In that perspective, I think I surely can take their positive attitude and take it to my life. That’s what I have been doing and that’s why the group really helps. I value it. It’s going on alright, I can laugh and joke about it now. I mean the only people I have told that I have it are obviously people I know through the group, my brother, and my dad, that’s it. My mom doesn’t know, parts of my family don’t know that I have it. I don’t think I’m ready to tell them yet. It’s a bit weird, it’s a bit of an awkward conversation with me and my mom. Well, you get caught out with stuff in your life, there are things you make sure you don’t pass it on to people and they don’t deserve it. That’s the way I live, yeah. R: Just to clarify so you kind of moved from dating people with herpes to dating people outside of the community, right? I: Yeah, so I have met a few people through the app and learned about their stories and learn about how they go through. So I started to get confidence in myself again and I would just meet up if I see someone “ah do you want to go to the zoo”, no, “or a drink”, yeah a drink. A lot of the time it doesn’t stand any more than that so I don’t feel like I need to tell them because it is not going to go to any other stage. I do get the confidence to go out and get a drink one on one. I only told one person who hasn’t had it and they rejected me because they don’t want it. R: Yeah, even though they are not aware that it is better if you know that you have it because there are many people out there who have it and they don’t know, right. So there are still a lot of other chances that you can still get it from someone else. Something else, did you have any major events related to medical professionals? How was the medical experience for you? I: It was very good. The doctor that saw me was really like she showed a bit of sympathy. When she told me what it could have been like she physically saw my face drop. I was like shell-shocked basically when I first found out and the feelings in my stomach you can feel anything. She was like really nice and help me through and gave me leaflets and “if you are struggling, go online”. Because I was so shell-shocked I wasn’t really picking up on it, because so many things were running through my head. It was just like a massive thing. And they were lovely. And I got a phone call from these results. When I got the phone call, I was camping with my friends so it was at a festival, and we were quite drunk and my phone goes off and I go sit in my car and answer it. It was just to confirm that I had it. And then, the signal was so bad that I couldn’t hear, he went through some stuff like treatment and some of that and I was trying so hard to listen to it, but I just couldn’t and then the signal cut off. So after the weekend, I rang them up and they just said stuff about the treatment
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plan. I never took any tablets really, except for the ones from the first diagnosis. Normally, even with an illness or a cold, I don’t take medication for it because I’m lazy. I don’t like the idea of taking pills so I just fight through it. That’s what I kind of do with my outbreaks, kind of like ride the storm if you know what I mean, make sure everything is clean and not making it worse than it already is. After a week it will go away. It is really quite mild my outbreaks. The medical staff was really nice and really understanding. So they didn’t make you feel awkward. R: That’s good to hear because my experience was quite bad. It’s already bad news and then you are treated not that well, that’s kind of a bad combination. Is there anything that you could point to where you could say this is the reason why you were able to switch your mindset? I: When I first got it, I felt alone. You feel already bad and then you see other people and it’s kind of selfish but you realise that they got it worse than you. So if he is so positive and he got it worse than what I got, I should not feel so bad. It’s a bit of a weird feeling, a weird explanation but if he can deal with that then I can deal with what I’ve got if it’s like half as bad as his. So personality wise, I’m a bit of a comedian, I like to make jokes and I try to make fun out of things. If I see people who make fun out of it, well if he can make fun of it, I can make fun of it. Obviously within the community not with people that I don’t know. When they joke about it, it’s like light hearted jokes, if you know what I mean. It’s when people who don’t have it talk about, and a lot of people make jokes and be quite nasty about it. They are kind of ignorant because they don’t really know what it is. People in my friend groups they will laugh and joke about it and you see them again and they will have a cold sore on their lip. And if you are like “you have herpes mate” and they don’t see that because they think it is just a cold sore. But it is the same virus. So it’s like, keep the positive in the group. I saw people who made me feel positive about it. So If I keep that up with your posts and your stories and end up on a positive note people will read that and will get influence from that. Some people are really having a negative time and the comments in the Facebook group are always up lifting, always positive. No matter what they are going through there are always people there, that are trying to build you back up and that helps a lot. It’s always nice to have people who got your back, no matter what it is. So that’s always been nice to see. It’s quite nice to see when it’s not happening to me, but if I read someone else’s post and they go through a rough time and they share their experience and the other people are really nice and showing their support. To read that, you feel that love of it and you feel a lift from it, even though it is not directed to you. It’s nice to be in this community. That’s how it get positive feelings from the group. R: That sounds great. It’s helpful to have supportive people around. I know that not everyone can fight the stigma in the same way because we all have different environments and different conditions and stuff, but where do you see yourself personally like connected to the stigma?
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I: It’s weird right now. I’m not prepared to put myself out there because you will just get thrown under the bus. You will try to defend it and they will be like “that means you have got it and don’t know anything about it”. It’s just this playground bullying in a way, but on the other hand, I accept my diagnosis and I just go on with my life and not let it affect me because it is just a minor thing in my life, I have so much stuff going on. I’m not going to let it affect me. I don’t push it back in my mind to lock it out, it’s because I have other stuff to worry about. Whereas two years ago it was like in the forefront of my mind and you worry obviously all the time. I have matured over it. So it’s just like part of my life now. Its there, there is nothing else I can do about. Just keep going on. I won’t let it affect me negatively anymore. Life is too short. It is the right attitude to have because if you start beating yourself up over it, it’s only going to get worse for you. You start stressing out, you start exhausting yourself and the outbreaks will come more frequent. So, it’s a circle and it will just keep going round and round. Whereas you kind of break free from it. It kind of break free from it and do something to take your mind off of it. It’s like how happy you have become and the outbreaks actually calmed down, because you are living well. It feeds when your immune system is low, that how it kind of strikes. Your immune system is up when you are happy and stress-free than you should be fine really. In my case anyway, I don’t know about other people because they might have other triggers, my own rule is just trying to stay positive and it’s more common than people think. That’s the only rule I give out to people I talk to, we all have it. R: You would advise just being more relaxed about it but still handle it responsibly. I: Yeah, if I ever meet someone who doesn’t have it and they want to take that relationship a little bit further, then I will tell them. It’s unfair from me to go through what we do and then one day you get this little outbreaks and start questioning. And because it has happened to me, I have been given it from someone who knew they had it and passed it over. I would be contradicting myself, it’s just a dick move. It’s just unfair, it happened to me, I don’t want to give it to someone else like that. Responsibility is key. R: That’s the right way. Being honest about it and see what other people decide. They can make their own decision. I: If they are mature enough to accept it. You know, cause I’m not at that type of conversation yet, but if I was, I would go in with like facts and stuff, not to backup my case but to give them some knowledge and to let them understand what they are getting into. Because they can just go to the internet type it in and they will see some horror shows coming up and the media. It’s a funny thing, to know that you have got it and why not and they will just guess something... shut the door and back off. Whereas if you get in with the right attitude and the right information, and treatment it gives them a bit of insight, that they can make a rational decision. I’m not at that conversation yet though who knows. R: Yes, there is a lot of misleading information out there. I got diagnosed two years ago with genital outbreaks and I barely could walk and now through all this time I really edu-
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cated myself and I confronted myself with all these bad feelings all the trouble I had to go through. I’m quite happy now, I’m more relaxed about it and my outbreaks are so minimal now in comparison to what I had before. The attitude and the mindset can really help to calm you down and not get stressed about, just see it as what it is. I will not let it annoy or bother me. I just came to a point where I said that this cannot control my life, there is other stuff going on and there are other things that are important. This research is my last step to completely get over it and move on. It’s really important to me that other people are educated about it because when I got diagnosed and I knew nothing. I knew it is not going away, but I had no clue how to deal with it and what was going on. The doctor didn’t really inform me. I really felt like I hiding but I also had these days when I just wanted to scream it out of the window and tell everyone. I decided to tell some friends and they were all really supportive, but they also didn’t have any clue about it. I had no one in my environment who could help me with medical information. I found a support group online on Facebook, mostly members from America, there was nothing really close to me. I couldn’t find anything in Europe. Since I had already planned a road trip to the US, I went to a support group there. I almost couldn’t enter the hospital and join the meeting because I forgot my passport. I thought it was not a big deal, but I had to discuss with them for half an hour and almost started crying. I just wanted to attend the meetup. We were around ten people. One of them was a sixteen years old girl, she was newly diagnosed and I was just sitting there and that was the moment that I realised “oh my god there are younger people out there, who have to deal with this”. Even if I feel really bad, I know I’m a stable person and even if I break down, I know that I can stand up again. Even if it takes time, I knew from the very beginning that I will get over it, I just needed some time to process it. But when I saw that girl... if you are a teenager you are dealing with so many other things and then you also have to deal with herpes. I cannot imagine how hard that must be. I just felt that I had to do something. From that moment on I knew I wanted to do something, I want to educate people in any way I can. I think now it’s kind of the time for me, I feel ready. My family knows about it and I also told all my friends. Now, that I study Communication Design, I think Design is a great area to combine with Health. I want to stand up for the topic and be open about it. I: I don’t want to compare it to anything else because it is not comparable, but like 20 years or 30 years ago being gay was not acceptable and now it is very accepted. So back in the days, you were wrong, if you love the same sex. Although it has been a little bit the butt of a joke, with you friends especially as kids because you didn’t know any better, “ah have you seen this, that’s gay”. Just a pull down more than anything, but it means way more than that. If you compare being gay as something being bad. That’s how it kind of goes with herpes, people knock it down because it is a thing that you can knock down. People feel so negative about it because they are the butt of a joke. The quicker we get over that stigma, a lot more people would come out with it, expose that they have got it. It’s going to take time and it needs people to bring it to life. All these stories about celebrities passing it on and
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people making memes and jokes about it are never going to do us any favors. I think more people need to be told: “listen it is not that bad there is worse out there”. R: I just started to research where the stigma came from and how it was built up, and it has been really interesting. I think even explaining that to people who are living with herpes would help because I feel like I cannot go out there and tell someone who doesn’t have herpes to don’t believe the stigma if some people living with herpes believe it. I cannot push the topic on someone who doesn’t want to know about, but people who are living with it are already connected to it, so if they all understand where the stigma comes from and there does not have to be any shame, that would already change something. In the 70s herpes was treated like you would treat the flu and no one would care. Now there is just this huge gap in between and it’s not treated like a regular skin condition anymore. After all the research, I actually started to understand who is telling me that I have to be ashamed. And now I feel like, no one can tell me to be ashamed of something like herpes. I don’t need to argue why I have it or how it happened, it is a lottery and it’s this game and everyone can lose it. It helped me to understand that there is a purpose why the stigma was created and to get the context of that. I hope with this kind of insights I can help people to move on. In the beginning, it was really hard for me to filter the information, what is true and what is not true. How do you know what you can believe and which are the valid sources on the internet? There is a lot of stuff out there but there is no filter. And in Europe no one talks about STIs in general so the internet is the only source. I: So in sex education, you get a list of STDs that you can catch. As a teenager you think I will never catch any of these anyway, you think you will be fine. In Britain, we are a very uplifting country and we are very supportive and you flip the coin and there is a lot that puts people down. The idea of having herpes and you see how people mocking it. It’s hard to go “Oh wait a minute this fact, this fact, this fact” and you making a point that they are misinformed, it will come back at you and put you down and that’s how it works. You get a lot of misleading information, even the news, it is what people want to believe. They will share it around and it is completely false. That’s what it sort of takes for a fake trend. So when you come out, a joke about STDs goes around. That’s why I value support group XY* so much, because you tell them I’m going through this and other people text you “we have been through that too” it’s stuff like that which makes it worthwhile. It makes you feel that you are not the only one and they can relate to it because they are going through the same trouble. It’s only people who don’t have it, your close family or my close family, they ... when I told my brother... I have been lucky because I never had anything in my life, you know he has never had anything. I’m quite lucky, don’t take it for granted. I was telling him and my brothers friend was sitting next to us and I thought only my brother could hear, but also his friend heard it. And he flipped around, my brother friends and he came with this massive story that he had this thing on his genitals and he is like “does that mean I have got it as well”. He got on the internet and did some research. I don’t know what he had but it kind of sounded bizarre, but it is different than what I went through. So I couldn’t tell him
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anything from my experience because it was completely different, but he had this thing and it went away and he carried on sleeping with women. So he knew he had this thing and he kept on sleeping with girls and it came back, and he did it again. And I was like “don’t you think you should tell your doctor about it”. He was like “every time I want to go to the doctor it will disappear”. I said, “go tell him about it, at least get some information about it”. The women he has slept with they might get it now. It’s that story there where that stigma comes around because he has slept with all these women. It’s not her fault, it’s his fault. He knew he had it and he still happily kept doing what he was doing. He didn’t get himself checked. It’s infuriating, it makes me angry. No matter who they are, they don’t deserve it. They might be lucky enough not to get it and they will probably go through stages that we had to go through and it is just not nice to see or hear. There needs to be correct information available, in a sense where... because I only got a few leaflets and we have a really dedicated health clinic here, which is brilliant but they give you a leaflet and at that time you are not going to look at it, you will throw it away. I think a few people ... I think the NHS do support groups ... I guess something similar to what you went to in America ... they sit around and talk and I think they do it here. But because herpes is not the biggest epidemic in the world in comparison to cancer, leukemia or other stuff that is more devastating in that sense that you can lose your life. So they don’t really kind of put herpes on the top list, but herpes can still affect you mentally so you can get really depressed. I think we need to link it with other things. When I got diagnosed they gave me a leaflet and that’s it and I went on with my day. I think what they should start doing with any kind of disease because any STD has a stigma, it’s always a butt of a joke and I think they should offer support classes. So you have been diagnosed with blablabla, here is your information pack and your tablets that you need to take, and if you are not feeling like happy or positive, go and sit down in this little meeting and talk about it and get it off your chest in that sense. Make yourself aware of the people and how they experience it. It could safe, I don’t want to say safe but help a lot of people. Because a lot of people in the group are having a really rough time and they are on their own. It is always nice to talk to someone face to face and have that human interaction and you can feel more welcomed and the warmth. I mean when I joined the support group XY* I felt very welcomed but it’s in front of your laptop, it’s a cold interaction, whereas you go and talk to someone else who can feel your pain and share experiences, you can grow a bond and feel more empowered. That’s what I think should start happening, but on the other side, the budgets are not there if it is not a massive epidemic. There would need to be people to volunteers for it. The support group XY* they have little meetups like a night out and there is one very local to me in September and I don’t know who else is coming but it will be nice to meet some new people and it would be nice to meet people I spoke on the internet before. You gain a person in your life in that sense. It’s all about interaction. You would be surprised how much people actually know or they sympathise with you and give you the support you need. R: I agree, it will depend on the people living with it because obviously it is not priority
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number one from a health perspective. I think it would be a nice idea to have these groups to meetup in person right after the diagnosis. That’s when most people need the support. I went to my first and only support group meeting half a year after my diagnosis, which was quite late I guess. I: Yes, because it’s like the first hit, it’s going to be the worst. And at that stage, you feel so vulnerable and you need that instant pick up and support. They should be told if you don’t want the human support that there are online groups. So in your own time, you can go and talk to someone on the internet even video chat and talk to them. You get diagnosed, you know nothing and when you get digging you will find some nasty things that will put you off. I think if you get into the right avenues and course right away, it will be easier to deal with. R: So kind of like giving them the right starting point and they can move on from there. Some groups online are so secret that you can’t even find them. I’m not really active in the groups anymore because I felt like I need to go back to the people who are actually surrounding me. Right now, I’m active in more groups for the research, but the level of the groups is so different. In some groups it is horrible what you read in there, not all the groups are helpful. If we could give people a hint, so once you are ready you can start doing these steps and find out yourself what works and what doesn’t, but at least you have good and tested sources. Everyone’s needs are so different, so that would be an opportunity for everyone to go their own way but still have guidance. It’s good to have all these inputs and ideas, do you have any questions or anything else that we haven’t talked about that you want to add? I: No, I think I mentioned everything. R: Thank you very much for being open about your HSV experience and sharing your story. *name changed for privacy reasons
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Appendix 8: Instagram Hashtags and Influencer Hashtag #socialchange #health #sexeducation
Posts 90,515 56,090,491 34,767
Influencer herpes_anonymous coldsoremanagement ctrl_your_sexlife
#herpessimplex #hiv #hivpositive #endstigma #endthestigma #education #std #stdsupport
#herpes #stdawareness #healthcare #healthymindset #livingwithherpes #healthymind #healthfirst #stds
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Appendix 8: Instagram Hashtags and Influencer Hashtag
#acceptance #stdlife #positivity #publichealth #awareness
908,094 909 7,886,190 136,849 2,988,561
#peoplewithherpes #peoplelivingwithherpes #disclosure #sexed #noshame #sexlife #herpesadvocate #overcomer
160 71 374,644 38,669 2,044,661 34,053 33 161,02
#journeytoselflove #sti #stigma #sex
4,334 2,947,178 181,494 5,703,210
thegoldengirlsproject awarecauses* * Major Influencer
Instagram (2017) Data of suitable hashtags and accounts worth following. Available at: https://www.instagram.com/ (Accessed: 27 August 2017)
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Appendix 9: HSV Journalists and Media Contacts Name
HSV Public / Sex Educator
Britni de la Cretaz
HSV Public / Sex Educator
HSV Public / Sex Educator
HSV Public / Sex Educator
HSV Public / Sex Educator
HSV Public / Sex Educator
Jenelle Marie Davis http://www.thestdproject.com/
HSV Public / Sex Educator
HSV Public / Sex Educator
HSV Public / Sex Educator
Rae Lewis-Thornton http://www.raelewisthornton.com/
HSV Public / Sex Educator
https://www.villagevoice.com/2015/09/02/ask-andrew-w-k-how-do-i-date-with-an-std/ HSV Public / Sex Educator
HSV Public / Sex Educator
HSV Public / Sex Educator
Design / MentalHealth
Design / MentalHealth
Tina Roth Eisenberg http://www.swiss-miss.com/
Design / Blog
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KINGSTON BUSINESS SCHOOL
MA CREATIVE INDUSTRIES & THE CREATIVE ECONOMY
Personal Research Project (Module BS7707 Gaining Insights)
Author: Stephanie Batliner / K1640358 Word count: 10’505 This work is the copyright of the author This work is confidential – NO