"But you don't look ill" - Exploring social stigma among women with IBD in England

Exploring social stigma among women with IBD in England

Submitted by Sylvia Kouveli in partial requirement for the degree of MA Visual Sociology, Goldsmiths, University of London 2022

"But you don't look ill"

INTRODUCTION 3 LITERATURE REVIEW

4 RESEARCH DESIGN AND METHODOLOGY

6 FINDING RESEARCH PARTICIPANTS

6 GENERALIZABILITY OF FINDINGS 8 COMBINING VISUAL AND PARTICIPATORY METHODS

8 ETHICAL CONSIDERATIONS

9 CHALLENGES AND SOLUTIONS 10 REFLECTIONS ON RESEARCH DESIGN AND METHODS

10 RESEARCH PROCESS AND FINDINGS

12 RESEARCH METHODS IN PRACTICE 12 Phase 1a) Semi Structured Face to Face Interviews .......................................................................................... 12 Phase 1b) Portrait Photography 12 Phase 2a) Focus Group 14 Phase 2b) River of Life exercise

INTRODUCTION

If seeing is believing, how do we encounter the invisibilities of other people’s experiences? Looking beyond the irony of conducting a visual sociology project about something that is considered invisible, I invite you to read this report and reflect on the things we see but ignore, as well as the things we intentionally hide from sight.

Inflammatory bowel disease (IBD) describes a group of diseases including Ulcerative Colitis (UC) and Crohn's Disease (CD), two immune mediated chronic conditions that involve inflammation of the gut and are characterized by periods of remission and relapse (Ananthakrishnan, Xavier and Podolsky, 2017; All About Crohn’s and Colitis, 2019).

Crohn’s and Colitis are considered invisible conditions because people living with the m do not have any immediately obvious external signifiers. The physical effects, combined with embarrassment about symptoms, places people with IBD at risk of experiencing disease related stigma, as they can face public prejudice and discrimination, which could lead to social exclusion and isolation (Crohn’s & Colitis UK position statement: Access to toilets, 2021).

The research project “But you don’t look ill” explores different aspects of stigma through the experiences of five women from different parts of England who are living with IBD. The topic is approached through a biographical narrative using visual and participatory methods.

Aiming to contextualize aspects of social stigma, we consider whether the invisibility of the condition contributes to stigmatization, and envision potential ways of minimizing stigma. The findings are translated into an immersive installation that places the audience behind closed doors both literally and figuratively and into the participants’ experience.

LITERATURE REVIEW

Social stigma has been widely associated with disease and disability. Extensive research has been conducted on stigma related to chronic diseases such as HIV and cancer and its negative consequences on patients, but there has been limited work done on IBD, particularly within the British context.

Drawing on existing concepts and definitions of stigma and invisible disability, this research project builds on previous studies, from Erving Goffman’s seminal work on stigma (1963) and his description of the “spoiled identity”, to N. Ann Davis’ work on invisible disabilities (2005). Employing participatory methods, it places social stigma in context, offering insights into aspects of stigma among an intergenerational group of women in England with IBD. It explores the contexts within which stigmatization may happen, whether and how the invisibility of this condition produces stigma, as well as potential ways of minimizing it.

Although researchers have become increasingly interested in the specific effects of IBD, most of the research has focused on the clinical aspects of the disease (Taft et al., 2009; Torres, 2015; Allen et al., 2017). Furthermore, studies conducted specifically on and for women with IBD are mainly related to symptomatology and fertility (Kane, 2005; Moleski and Choudhary, 2011; FSRH clinical guideline, 2016). Even though the health related quality of life for women with IBD has been researched (Stjernman et al., 2011), there is a lack of robust research on how IBD affects women’s social lives, especially in Britain.

Kleinman reminds us that “illness is not simply a personal experience; it is transactional, communicative, profoundly social” (1989, p. 185), so it cannot be seen as separate from social structures and experiences. This research project extends the personal experience with chronic illness to the social experience, placing it in a group dynamic.

Goffman’s theory that conveys stigma as “an undesired differentness from what we had anticipated” (1963, p. 15) has remained prominent to this day, and constituted the starting point of this research idea. However, the six dimensions of stigma by Jones et al. (1984) provided additional tools that allowed me to delve into the lived experiences of the participants, considering factors such as concealability, course of the mark, disruptiveness, aesthetics, origin, and peril.

Stigma is a manifold concept with varying dimensions, so it would be helpful to briefly define three different forms: enacted or external, perceived, and internalized (Guo, Rohde and Farraye, 2020).

Enacted stigma refers to outward discrimination, such as unfair treatment or abuse towards the stigmatized individual. Perceived stigma describes the individual’s belief or feeling that others have a negative attitude towards them or that they will treat them unfairly. Internalized stigma encompasses the individual’s belief that negative attitudes towards them are deserved and can go as far as self stigmatization, leading for example to social withdrawal. Self stigmatization was particularly relevant to my research and that ruled out using the stigma concept constructed by Link and Phelan’s (2001), because the dependence of stigma on power differences was not applicable in this case.

What proved particularly useful to my research was Goffman’s correlation of stigma and identity (1963), because unlike others’ early works, he highlights the effects of social stigma on the individual’s sense of identity. He points out how people with invisible conditions that are potentially discrediting, manage whether and in how much detail they disclose their condition to others. Davis (2005) goes into further detail about this double bind, pointing out that disease disclosure isn’t straightforward. Concealing an invisible condition could entail managing a crisis without any assistance or accommodations, but revealing it could mean enduring the discomfort of being challenged by strangers about their condition. This predicament was prominent in the participants’ narratives as well

When applying theories of stigma to illness narratives, it is important to keep in mind that “chronic illness is nothing if not various, as many sided and differing as our lives” (Kleinman, 1989, p. 185), making individual experiences as important as generalizations. When looking into an invisible chronic illness like IBD, "we need to look beneath the surface" (Davis, 2005, p.40). Exploring the intersection of invisibility and stigmatization is thus necessary to comprehend the social interactions that are affected by the individual health conditions of women with IBD in England.

RESEARCH DESIGN AND METHODOLOGY

Developing the Research Design

To understand what aspects of social stigma exist among women in England who have IBD, I designed my research as a participatory project using interviews, portrait photography, focus groups and the River of Life exercise as qualitative methods, which I have explained in depth below. The participants’ involvement throughout the different phases of the project not only informed the visual output but also gave them agency and a tool to communicate their experience to people within their circle and beyond.

The decision to focus this research project exclusively on women was two fold. Primarily, I wanted to build rapport with the participants during the one to one interviews, where my personal experience as a woman with UC could alleviate some of the discomfort associated with disclosing intimate details specific to women’s experience with the illness in social contexts. Secondly, I wanted to foster a safe space within the group dynamic of the the focus group session where the participants would feel comfortable to share even the most intimate or embarrassing details of their experiences, which they may not have wanted to share with members of the opposite sex. Lastly, from a purely practical perspective, this was a way in which to limit the scope of the project so that it could be manageable within the available timeframe. This gendered approach does not discount the experiences of men or gender diverse people in England with IBD. On the contrary, I believe that men and gender diverse people potentially have a unique set of experiences with social stigma.

Finding Research Participants

My initial aim was to conduct this research with 10 15 participants. I reached out to women via my personal Instagram account, word of mouth, and through the organizations Girls with Guts1 and Crohn’s & Colitis UK2 .

When Crohn’s & Colitis UK published my open call for research involvement on their facebook page and group (see Appendix A), I received an overwhelming response within just a couple of days, 168 women expressed interest in being involved in the project. There were 16 women who were serious about

1 https://girlswithguts.org/ 2 https://crohnsandcolitis.org.uk/

participating, but for varying reasons including health issues, some participants dropped out shortly before the start of the research. The sample was ultimately narrowed down to 5 participants, evenly aged between 20 and 64 years, having been diagnosed with either Crohn’s Disease or Ulcerative Colitis for a varying number of years, but all for a minimum of 12 months. Multistage sampling was used to determine the research participants. The first stage was stratified sampling, where location, medical history and gender were considered (i.e., women with IBD in the UK). Then, two different stages of self selection followed. When prospective participants who had answered the open call received the Information Sheet (see Appendix A) there was a high rate of refusal related nonresponse. From those prospective participants who continued to express interest, a second stage of self selection occurred when the time, date, and location of the in person meetings were communicated to them. This ensured that the final pool of participants were truly committed to the research project, but ultimately caused the scope of the research to be narrowed to participants in England only, instead of the entire United Kingdom.

Image 1: screenshot of the Crohn’s & Colitis UK’s webpage inviting people to take part in this research.

Generalizability of Findings

Although each individual case has unique aspects from both a medical and a sociological perspective, there were many consistencies when exploring the ways in which social interactions become altered or individuals become stigmatized due to a chronic disease like IBD. Nevertheless, I would be cautious and avoid inferring anything from this research’s sample to wider issues. Biases arising from the self selection problem that I described above must be taken into consideration, since the final set of participants do not represent the entire target population.

As Goffman argues, “stigmatized individuals may join a group of others with similar characteristics or refrain from such membership to avoid association with the stigmatizing characteristic” (1963, p. 38). This is confirmed by the fact that my final participants all came through the Crohn’s & Colitis UK communication channels, a charity organization that offers support and information on IBD. On the contrary, an individual whom I had approached through word of mouth distinctly said that although she was interested in the project, she was “tired of being the poster girl for Ulcerative Colitis”.

During the sampling process, I intentionally kept the medical history parameters open enough for anyone to express interest. The only requirement was having been diagnosed with IBD. I did not ask the prospective participants about which IBD they had been diagnosed with, the number of years they had been living with the disease, or whether they had undergone related surgery. Although there was variety in age, IBD diagnosis, and number of years living with the disease, none of the participants had undergone any IBD related surgery. This is an interesting finding that may relate to self selection bias, but also presents opportunities for future research to explore this lack of interest in participation among these individuals.

Combining Visual and Participatory Methods

Data was collected through a combination of participatory and visual methods, with an overarching biographical approach. Mixing methods permitted me to triangulate my findings and place them in context. Specifically, I used semi structured face to face interviews, portrait photography, focus group discussion and the hands on “River of Life” exercise (Rossi, 2019; Glover and Arora, 2017). I found that the particular research methods I used fostered a collaborative spirit, meaning that the participants had shared agency but also achieved their own goals (Pink, 2001). In the following section each method is discussed in detail and in relation to the research process.

In line with Back and Puwar’s manifesto for live methods (2012) and seeking an imaginative approach to my research, I was motivated to incorporate portrait photography and the “River of Life” exercise in my methods. These creative methods foster deeper participant engagement and present alternative ways of knowing the participants’ worlds, while also presenting opportunities for a more accessible public presentation of the findings.

Ethical Considerations

Written informed consent was granted by the participants for the use of all material collected, including audio recordings and photographs. Throughout the data collection phases, I made it clear in both written and verbal communications that participants were free to withdraw from the project at any time, without the need for an explanation. In terms of anonymity, the participants’ names are used neither in the research text nor in the output, but all participants have agreed for their portraits to be used.

Although the research did not involve any unusual ethical issues, I did take into consideration the stress that could be caused to both my participants’ and myself during the data collection phases. As already mentioned, having been diagnosed with UC myself, I was aware of what subject matter could be distressing or emotionally charged.

In order to mitigate any discomfort caused by sensitive topics, I used the following strategies: I established rapport with participants by sharing my motivation for this research as well as some of my own IBD experiences; assured them of confidentiality; started with questions that wouldn’t make them feel vulnerable; provided context around potentially sensitive questions, so that participants would feel comfortable to reveal their true answers as opposed to providing a socially desirable response; monitored the participant’s communication behaviour (verbal, non verbal, prosodic), and allowed for some space between the sensitive questions (e.g. switch to a different question, take a break, etc.) if behaviours of discomfort were noted; and gave the option to skip a question.

Challenges and Solutions

Initially I had designed this project to include a journaling activity and a group feedback session, following the focus group and River of Life session. After having conducted the interviews with the participants, I realized that journaling did not resonate with most of them, so I decided to remove it, as it would be an additional step for the participants that would require more of their time and energy. The group feedback session was changed from being a data collection method to a simple online catch up call, where approximately 6 weeks after the in person group meeting, I met with the participants virtually to inform them about the final output of the project and receive their feedback. This was especially important because I wanted to ensure that all participants were comfortable with how they were represented in the final output that would also be presented publicly in an exhibition.

The main practical challenges of this research project revolved around the participants’ wellbeing. Coordinating a date and time that would be suitable for all to meet for the focus group and workshop session meant that apart from individual availability, I had to take into consideration the fact that most participants could not travel mornings because of the increased need to access toilet facilities.

Additional precautions were taken in order to minimize the risk of COVID 19 transmission during the interview, portrait, and group sessions, especially for the immunocompromised participants.

Last but not least, the translation of the data into a visual output presented its own set of challenges. As an installation, it required access to a site, and on site building or construction from scratch by a set designer. Further details on this can be found in the Visual Output section below.

Reflections on Research Design and Methods

Reflecting on the choice of methods in relation to the participant recruitment process, I realize that many prospective participants may have been deterred by the multitude of phases and the requirement for their extensive involvement. Perhaps if I had already removed the journaling and final group session from the information sheet they received, I would have had a higher number of participants. The prospective participants' relation to the photographic lens specifically whether or not they enjoy being photographed could have also been an important factor in deciding whether to take part.

Being a woman with IBD, thus myself falling within the scope of the research, I thought extensively about the processes my research participants went through. From asking myself the interview questions to creating my own River of Life, I often assumed a dual role, constantly reflecting on how my research affects the participants.

This reflection process proved useful, as the methods were tested before being applied. At times though, it did place an additional burden on me as a UC patient, listening to negative experiences of other women with IBD and extensively reading academic research on both physical and social effects of chronic illness. I was aware of these risks prior to commencing my research, so I ensured that I had time and space after interviews and group sessions, or when relistening to the recordings and rereading the literature, to allow for some internal processing.

The research participants often mentioned how people in their circle who didn’t have IBD, “don’t really understand any of that.” With regards to my interaction with the participants, I believe that there was an immediate proximity established from my similar position to theirs a woman with IBD that dismantled the researcher subject dynamic, allowing for more direct, candid answers. At the same time though, I made sure to ask unassuming questions and arrive at conclusions based on their narrative and not my own.

Ultimately, I deem that the methods used were suitable for this type of research project, especially considering the time and budget limitations.

RESEARCH PROCESS AND FINDINGS

Research Methods in Practice

Phase 1a) Semi Structured Face to Face Interviews

The data collection process began with semi structured face to face interviews. The interview questions (See Appendix B) were designed to generate a biographical narrative by following the trajectory of relevant situations that produced change in the stigma they experienced. When developing the interview topic sheet, I conducted a pilot interview with a trusted friend with IBD. Her feedback, and the type of responses she gave, helped me with phrasing the questions and fine tuning the terminology used.

Participants had the liberty to choose the place for their interview, and they invariably chose their homes. This was consistent with the ideal conditions of the research design, as the familiarity and privacy of the domestic space permits more intimate topics to be discussed (Adler and Adler, 2002). The conversational style of the interviews allowed for a natural flow and in order to not interrupt the continuity of the conversation with notetaking (Gall, Borg and Gall, 1996), all interviews were audio recorded (See Appendix G).

Phase 1b) Portrait Photography

Following the interview, I made a photographic portrait with the participant using a DSLR camera. I prompted the participants to think of how they would like to be seen within the context of this research project and reminded them that they could choose whether to show their face, focus on a detail of the body, be in silhouette, or be represented in any other way that they feel comfortable. All participants were comfortable with showing their faces in the photos. The portrait sessions invariably included something that was significant to them or something related to the treatment of their IBD. Following the session, I uploaded the photographs on a private web platform, where each participant had the time and space to look at each frame and choose the ones she liked and agreed to be used in the project (see Appendix C). The participants were also encouraged to download and save any or all the photos from their individual portrait sessions.

Image 2: Portrait of participant.

[Photograph modified for this version of the document in order to maintain anonymity]

In the email brief that was sent to each participant when booking the interview and portrait session, I had included a link where participants could view some of my photographs as examples of what a portrait could be. These photographs were all naturally lit and included close up portraits of women from the waist up and facing the lens, medium shots facing away, wider portraits in the domestic space facing towards or away from the lens, close up details of hands, as well as close up shots of the abdominal area with and without IBD related surgery scarring.

The purpose of sharing these photographs with the participants was for them to become acquainted with my photographic practice and know what to expect in terms of technical and aesthetic results. Reflecting on the portraits made with the participants, there may have been some influence from the

examples shared, or even from my own perspective as the photographer. It is interesting to note though that none of the participants chose to reveal an explicit physical aspect of their IBD.

Phase 2a) Focus Group

Once all the interviews had been conducted, I listened to the recordings and drew out common themes that the participants discussed, as well as the answers to my research questions. These topics became the basis for the focus group discussion. The research design called for the focus group to be done in person, so I booked a room in Warmington Tower on Goldsmiths’ campus. Unfortunately, two of the participants could not attend in person; one of them joined via Microsoft Teams and the other one couldn’t join at all. The hybrid nature of the focus group discussion proved to not be an issue, and communication among participants flowed effortlessly.

Following a simple ice breaking exercise, I facilitated a discussion among the participants on the topics of interest for my research. Throughout the discussion I ensured there was balance in who spoke, although everyone seemed to contribute to the discussion equally. After wrapping up the discussion, we took a break before moving on to the hands on part of the session, the River of Life exercise.

Phase 2b) River of Life exercise

The River of Life exercise is a narrative method to help explore and present a specific part of your life (Rossi, 2019; Glover and Arora, 2017). Using different sizes of paper and crafting materials, the participants were given one hour to create a narrative about how their IBD has affected them socially, using the metaphor of a river. Before beginning, I showed the participants my own River of Life as an example, and verbally narrated my journey to them.

At the end of the 60 minutes we took a break, and then came back to present each river. The River of Life exercise rendered some interesting results, both in terms of the visual representations chosen, as well as the themes that the participants deemed important to focus on. Each participant spoke about the different elements of their journey and the metaphors used, as well as any representational issues they had. The rivers were photographed (see Appendix D), and the descriptions were audio recorded for analysis. All participants decided to keep their own rivers.

I met online with the two participants who could not attend the focus group session in person, and went through the exercise. They theoretically had an infinite amount of time to complete it at their convenience, but I suggested they limited themselves to the same one hour session the in person participants had. We then met again online so that they could present their rivers to me, and I could record the outcomes. Interestingly, these participants may have had more limited access to materials than the ones who attended the session in person, but they were more resourceful, printing images from the internet, or creating a three dimensional river, using shawls, rocks, and paper constructions (see Appendix D).

Image 3: River of Life by participant.

Approach to Data Analysis

I used a constant comparative method based on grounded theory (Glaser and Strauss, 1967) to suggest an interpretative analysis of the data collected. Keeping my research questions in mind, I reviewed and re reviewed the audio recordings of the interviews, focus group, and River of Life descriptions, as well as the participants’ choice of portraits, conceptualizing the events and experiences described by the

participants. I focused on the participants’ concerns, trying to identify the concepts that emerged from the data. Using a colour coding process (see Appendix E), I identified and noted key phrases that fed into central concepts of the research. A second phase of coding followed, where specific quotes were categorized within the key findings.

For the analysis of the portraits of the participants, I examined their sites and modalities (Rose, 2011). Specifically, I considered the production, revealing that the chosen images were made in or around the home; the image, as in the actual visual content depicting the participant sitting calmly, engaging with something personally significant to them (e.g. maths problems, cooking, a family member, etc.), or displaying something related to their IBD (e.g. medication, a liquid diet drink, letters from the NHS, etc.); and the audiencing, as in where it encounters its viewers, which is the private space within an immersive installation.

Findings

With this research project I aimed to discover and explore the aspects of social stigma among women with IBD in England. I asked the questions, “In what contexts of social interaction is stigma experienced?”, “How does the invisibility of the disease produce the stigma?”, and “What are the potential ways in which the experience of stigma can be minimized?”.

My data analysis did provide answers to these questions. Stigmatization, whether perceived, enacted, or internalized, appears to occur in the workplace or at school as well as in encounters with strangers in

settings such as pubs and restaurants, public toilet facilities, travel hubs, and at outdoor activities. Some aspects include denial, embarrassment, fear, identity questioning, and social withdrawal.

It also appears likely that the invisibility of the condition produces stigma, as it creates disbelief, resulting in the stigmatized individuals being challenged and needing to prove their condition. Potential ways to minimize stigmatization are increased awareness through formal education and mass awareness campaigns on traditional and social media.

Each of the emerging themes could contribute to a separate research project, so for the visual output I decided to focus on the concepts that had the most interesting and surprising narratives. Namely identity being questioned and re defined, the invisibility of the condition causing disbelief in others, self exclusion from social activities, and education being the key to minimizing social stigma. Each of these is considered in further detail below.

Identity in Question

The most interesting finding was one that was particularly prominent in the Rivers of Life that the participants made. Three out of the five participants spoke extensively about how they questioned and re defined their identity following their IBD diagnosis.

“It’s difficult to come to terms with who I thought I was and who I try and should be.” Participant A, age 36, on the expectations of motherhood and having a senior work role. This questioning of one’s identity that the participants described in the research usually followed a period of denial, related to the illness and to the degree to which the structure of their lives was being affected by it.

“I don’t want to be judged or known as ‘J who has Crohn’s’.” Participant J, age 45.

“It definitely affected work, significantly. I was having to use mesalazine enemas so I was getting up at 5 in the morning so that I can lie on the bathroom floor for two hours and then I was just so exhausted. I had a period of time when I worked only part time, just afternoons.” Participant H, age 64.

Of the two participants who didn’t mention identity on their River of Life, one did make reference to their identity in the interview. Interestingly, both of these participants have lived with their IBD for longer than the rest and are also the eldest among the group. One of them even stated that “there are

more things to worry about when you are younger”, giving a hint that age is a factor in how you deal with the condition.

“It felt like my entire life had been taken over by this.” Participant S, age 20.

Apart from the participants’ own testimonies in the interviews and group session, the portrait photographs reveal interesting aspects of identity. During the photo session, the participants were keen to be first photographed in a relaxed state lounging on sofa or having a cup of tea or with something that was significant to them, and then with something related to their IBD. This is interesting because even within the context of research, they all first opted to show themselves as an individual independent from their IBD, and then in relation to their condition.

Invisibility = Disbelief

According to the participants’ testimonies, the invisibility of the condition seems to generate disbelief in people who do not have IBD. Participants have often been challenged about their condition not just within the workplace and educational institutions, or in public facilities, but also in medical settings.

In the following quote from a participant we can see the perceived stigma where “in the stigmatized arises the sense of not knowing what the others present are ‘really’ thinking about [her]” (Goffman, 1963, p. 25).

“I felt stressed and what reaction I would get, because I don’t look disabled, I don’t look like I have a condition.” Participant N, age 55, on using the Can’t Wait card3 provided by Crohn’s & Colitis UK to use toilet facilities not normally available to the general public, or to skip the queue.

Below we see an example of enacted stigma, where coworkers were unsympathetic to scheduling accommodations made for one of the participants.

“And that’s another of the hidden disability ones. You know, if you’re well enough to be at work in the afternoon, why can’t you work in the morning? Management understood, coworkers didn’t.” Participant H.

There are several examples such as the above, some of which are included in the research project’s visual output (see Appendix E).

3 https://crohnsandcolitis.org.uk/info support/become a member/cant wait card

Self Exclusion

Participants often excluded themselves from social activities. The reasons for non participation were practical, pertaining to limited or no access to toilet facilities; physical, relating to discomfort, pain, and fatigue; and/or emotional, such as embarrassment, awkwardness, or fear of reactions and rejection.

“I don’t want to have a bad week and ruin it for them.” Participant S, on not going on a day trip to the beach with her friends.

“I didn’t physically feel like socializing.” Participant H.

These are examples of internalized stigma, where the participants have felt guilty or responsible for others in relation to their condition, to the extent that they begin to withdraw from the social sphere.

“After a while you feel a bit left out of everything, but you are leaving yourself out.” Participant S.

Education

Education and mass awareness campaigns that make IBD widely known are potential tools to help minimize social stigma around these conditions. This was what all participants consistently responded when asked if they could think of anything that would help their experiences in social interactions.

“It’s completely down to education. So many different conditions are more acceptable now because people are more aware of them, there’s more education around them.” Participant N.

Campbell et al. (2005) outline three approaches to challenging stigma: educate, legislate against discrimination, and mobilize participation of community members in anti stigma efforts. The first and third approaches were common among the participants, who are active in the Crohn’s and Colitis UK community in each of their localities or online.

“You think of other illnesses that everyone knows of, like cancer, everyone knows what that is, [...] you can just say, ‘oh, I’ve got cancer, I really need to go to the toilet’, like if you had bowel cancer or something, everyone says ‘ok, yeah, go’, because everyone knows that word […] and I feel like we need IBD, or Crohn’s, or Colitis to get more awareness.” Participant S.

“When you’re diabetic, [...] you have mentors or people you could contact for first hand information, feelings of how they were when they first got diagnosed, top tips and things like that.” Participant N.

VISUAL OUTPUT

Inspiration and Influences

Nicolas Bourriaud (1998) writes about relational aesthetics and the making of art that is inspired by human relations in their social context. My aim with the output of my research was to immerse the audience in the experience of the participants while presenting the findi ngs, so with my piece I assumed the role of facilitator rather than maker.

N. Ann Davis’ text on invisible disabilities (2005) inspired me to make the audience look beyond closed doors. Focusing on the key words of my findings identity, invisibility, self exclusion, and education I

“If it can be on the national curriculum, like in biology or PSHE.” Participant A

developed individual ways of representing them and then incorporated them into an installation concept. As per Bourriaud’s approach, the installation takes the form of an information exchange between the artist and the viewers, who inevitably become part of the installation something that also reflects the participatory nature of the research design.

My artistic influences for the overall installation include Adam Farah’s WHAT I’VE LEARNED FROM YOU AND MYSELF (PEAK MOMENTATIONS / INSIDE MY VELVET ROPE MIX) (2021), the collaboration between Lubaina Himid and Madga Stawarska Beavan on Blue Grid Test (2020), and Tania El Khoury’s interactive live art project Cultural Exchange Rate (2019). For the portraits of the participants, I drew inspiration from Sophie Mayanne’s Behind the Scars project (2017), but ultimately the final photographs reflected my own practice, adhering to conventions of contemporary portrait photography that render the results familiar to the viewer.

Immersive Installation

The installation consists of two toilet stalls. One of the stalls is marked as an accessible toilet, but is permanently locked and has a QR code and the instruction “please, scan to access”. The other toilet stall is unlocked, and footprint stickers on the floor encourage visitors to queue in order to step inside it. Within the queuing visitors’ field of view there is a mirror and a brief text that describes the installation. The convention of queuing and the inability to access the accessible toilet replicates the participants’ experience of potentially stigmatizing situations. The visitors who scan the QR code on the locked accessible toilet are directed to a webpage that contains a series of links providing educational material on IBD.

Image 4: Visitor scanning QR code on installation.

There is space for only one visitor at a time to enter the unlocked toilet stall and there is no limit to how much time they can spend there. Once they step inside, they are prompted to take a seat on the toilet. On the inside of the stall’s door and walls there are several scribbled phrases and doodles. The doodles scribbled around the stall are copied from the participants’ Rivers of Life or from items they wanted included in their portraits. The phrases are written in five distinct handwriting styles and colours, each corresponding to a participant of the research project. These are all direct quotes relating to concepts of identity, invisibility, and self exclusion. On the inside of the stall’s door, at eye level when sitting on the toilet, the visitor is faced with portraits of the participants on a slideshow rotation displayed on a digital picture frame. This convention is similar to how they would encounter an advertisement in that space.

When the visitor steps out of the toilet stall, they are faced again with their own image in the mirror, which is intended to make them reflect on their own identity in relation to what they read inside the stall. Please see Appendix E for the full installation documentation, including a video walk through of the installation

For the purpose of documenting the research’s visual output, the installation was put together as an on site intervention in the offices of a cultural centre. It is not a site specific piece, so it could easily be constructed in any space for exhibition purposes or adapted to any toilet facilities.

Based on the results of the research, ideal spaces for this to be installed and where it would have the most impact are those where stigmatization can occur, namely, workplaces, educational institutions, travel hubs such as airports or train stations, cultural centres and events venues, sport centres, and hospitality venues such as pubs or restaurants. As an on site installation, it could prove an effective education tool, since its viewers would include not just people who are aware of it and visit it deliberately, but also unsuspecting visitors who encounter it as they enter the toilet facilities and the site’s staff.

Image 5: Visitor sitting inside unlocked stall of installation, with the door open.

Reflections on Visual Output

When I was developing this idea for the immersive installation, I was considering having one stall per participant, with a printed photo inside each door, and only that person’s quotes scribbled on the walls. Through experimentation, I realized that combining all the quotes in one stall is much more powerful and the experience becomes much more immersive for the visitor. So, I decided to use a digital frame or tablet to display the photographs, although I was skeptical about the experience of looking at digital photographs while sitting on a toilet.

Image 6: POV photograph of visitor sitting inside the toilet stall, immersed in the installation.

To minimize the potential damage to the toilet stall partitions, I used transparent adhesive sheets instead of writing and doodling directly on the walls and door. This may reduce the level of credibility and make it less of an authentic experience for the visitor, but it also makes it easier for the venue to accept having the piece installed on their property.

CONCLUSION

Building on existing literature around stigma, identity, and invisible disabilities, we have explored how social stigma affects women in England with IBD. Through participatory and visual methods, we went beyond the conventional narratives around the physical and medical aspects of IBD, into the consequences that the illness has on one’s social life.

The research findings show that women in England with IBD are likely to experience some social stigma following their diagnosis. The invisibility of the condition may lead the inflicted individual to question her identity, or to exclude herself from social interactions. Increased awareness and education on IBD could help minimize the occurrence of stigma. Although these findings cannot be generalized to the wider population, they do provide some insight that could lead to a wider exploration of the topic.

Occurrences of social stigma that were not included in this research project due to issues of scale, provide opportunities for further research. These include unsolicited advice on diet and lifestyle from people who have no knowledge of the disease, contributing to alienation and isolation; the positive and negative effects of the COVID 19 pandemic on people with IBD in relation to their social life; how IBD affects traveling (from commuting to vacationing) and the subsequent consequences on an individual’s social life.

Furthermore, the gendered perspective of this research could spark interest for future research, where gendered experiences of disease related stigma are explored separately and then compared with each other. Lastly, it would be interesting to explore social stigma in individuals who have had IBD related surgery or specifically those who live with a colostomy bag.

Through the participants’ testimonies, an immersive installation was conceptualized for the dissemination of the findings within and beyond the academic community. The participants’ visual work fed into an installation that not only provides insight into the research findings, but also contributes towards an increased awareness of IBD, while directly including the people affected by it. An installation informed by sociological research such as this could serve as a tool for public engagement, contributing towards the betterment of the social world around us.

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Appendix A. Participation Open Call and Information Sheet

Through the Take Part in Research program the Crohn’s & Colitis UK charity organization helps researchers recruit people affected by Crohn's or Colitis into studies as participants. Through their platform, I submitted a form requesting help to recruit participants for my research project and they accepted it. More information about this process can be found here: https://crohnsandcolitis.org.uk/our work/research and evidence/for researchers/research involvement support

Appendix A, Image 1: Screenshot of the Crohn’s & Colitis UK webpage inviting people to take part in this research.

As standard practice, they advertise eligible studies on their website under Research Involvement Opportunities and tweet it from their Crohn's & Colitis Research Twitter account @CrohnsColitisR., but in my case, they also published it on their facebook page @crohnandcolitisuk. In addition, I had posted about this open call on the Crohn's & Colitis UK Forum private group, @CCUKforum.

Appendix A, Image 2: Screenshot of tweet to participate in my research, on the Crohn’s & Colitis Research account.

Appendix A, Image 3: Screenshot of facebook post to participate in my research, on the Crohn’s & Colitis UK page.

Appendix A, Image 4: Screenshot of my post to participate in my research, on the Crohn's & Colitis UK Forum private facebook group.

The women who expressed interest received the following information sheet.

Appendix A, Image 5: Information sheet.

Appendix B. Interview Questions

The face to face interviews were conducted with a conversational style, based on the structure of the questions below, while also allowing for new or unpredictable topics to arise.

• Talk to me a little bit about when you first started noticing that something wasn’t quite right with your health.

• What was your social life like then?

(School, Work, Family, Friends/Pub/Cinema, Sports/Gym, Travel, etc...)

• When and how did the diagnosis of your IBD happen?

o In case of hospitalization and/or surgical intervention and/or medical treatment: What was that time like?

Who did you talk to about your diagnosis & treatment?

• What was it like when you started getting back to your regular routine?

o Were there activities (work, travel, sports, going out) that you did less of, or stopped doing altogether? What was the reason?

• How do you talk about your IBD? Casually bring up in conversation / Officially declare it?

o Do the people in your family & work & social circle know about your IBD? How did they react?

o Are there people who you haven’t told? Why not?

• Are there specific people around whom you worry about your condition?

• What is your social life like now? (School/Work, Family, Friends/Pub/Cinema, Sports/Gym, Travel, etc...)

o How do you experience new interactions with coworkers/friends/romantic partners?

• Can you tell me a bit about how you handle your IBD in everyday situations, outside your home?

• I named this project “But you don’t look sick” because IBDs can generally be considered invisible. In your experience, how does the invisibility of the disease affect interactions and social encounters?

o Can you share some examples of situations where you’ve had to “show”/prove your condition? (ie. around food, use of toilet, travel, etc...)

• Have you worried about your condition more or less since you have it? If so, why and when?

• Have you ever felt embarrassed because of it? When, why? How did other people react?

• Is there something that could be done that you think would help your experience in social interactions?

Basic demographic info:

Name: Age: Location: Living arrangements: Employment status: Marital status: Diagnosis: Date of diagnosis: Surgical interventions, if any: Medication currently taking, if any: Current state of disease:

In all instances, the basic demographic info was collected as part of the conversation, where the participant mentioned these details at various stages of the interview without the need to explicitly ask about them.

Please note that the original title of the project was “But you don’t look sick”, but it was changed from “sick” to “ill” to be better understood in British English.

Appendix C. Participant Portraits

Each participant chose between 5 and 14 photographs that they were happy to have as part of this research project. In order to not make this document extremely large, I have included below one portrait for each participant.

[Photographs modified for this version of the document in order to maintain anonymity]

Appendix C, Image 1: Portrait of Participant A.

Appendix C, Image 2: Portrait of Participant H.

Appendix C, Image 3: Portrait of Participant J

Appendix C, Image 4: Portrait of Participant S

Appendix C, Image 5: Portrait of Participant N.

Appendix D. River of Life Activity

To introduce the River of Life activity, I asked the participants to name some features of a river. A river has a source; it crosses mountains, plains, and hills; it runs fast and turbulent or slowly and lazily; it bends and it meanders; it forms lakes, waterfalls, and rapids; it flows, but it also dries up, it gets blocked, it becomes polluted. A river adapts to its surrounding environment, overcomes obstacles, taps into other rivers and lakes, and finally unites to a vaster sea.

Participants were prompted to think of the metaphors of these features in relation to how their IBD has affected their social lives in the past, present, and how they visualize the future. With minimal text, they were asked to draw, collage, paint their own River, focusing on the key events, milestones, and the people that were brought up during the focus group session. They were reminded that we’re mainly interested in social interactions, and that social stigma could be enacted or felt discrimination from others, or even from ourselves.

Appendix D, Image 1: Preparing for the River of Life exercise, with crafting materials spread out on the table.

Crafting material including colour pencils, crayons, markers, acrylic paint, pipe cleaners, yarn, fabric scraps, stickers, glitter, glue, scissors, paintbrushes, and an assortment of paper in different sizes and colours, as well as a stack of magazines to cut out words and images, were placed on the table for the participants to use. After 60 minutes of creating, we took a break and returned to the room to verbally describe each of our rivers. See the photos below for the participants’ rivers.

Appendix D, Image 4: River of Life by Participant J.

Appendix D, Image 2: River of Life by Participant S. Appendix D, Image 3: River of Life by Participant N.

Appendix D, Image 6: River of Life by Participant H.

Appendix D, Image 5: River of Life by Participant A

Appendix E. Visual Output

The exploration of social stigma among women in England with IBD brought forward the themes of identity, self exclusion, and invisibility. These are the topics that were explored with and by the participants, and are represented in an immersive installation that also raises awareness on IBD, as per the participants’ recommendations.

Appendix E, Image 1: Preliminary sketch conceptualizing the installation

Video documentation of two versions of the installation:

Þ Please visit https://youtu.be/VWfDNgk ph8 to view a video of the finalized immersive installation, installed in existing washroom facilities

Þ Please visit https://youtu.be/LxdEa6ZzV50 to view a video of the immersive installation constructed in the exhibition space of Goldsmiths, University of London.

Appendix E, Images 2a and 3a: A single toilet stall constructed within an exhibition space.

Appendix E, Images 2b and 3b: The two toilet stalls of the installation, on site at the toilet facilities of an office space.

The locked stall marked as “Accessible toilet” is closest to the entrance of the facilities. This allows the visitor to notice the locked stall and scan the QR code, perhaps as they wait in the queue for the other stall.

Note that the instructions “Please, scan to access” and “Please, take a seat” have the same font and similar structure. This helps the visitor understand that they are instructions and that they are part of the same project.

The QR code on the accessible toilet stall leads to this webpage with further informative links on IBD: https://linktr.ee/youdontlooksick

One of the participants’ portraits was used as the profile picture, in order to further connect this page with the project.

Appendix E, Image 5: installation visitor accessing QR code on mobile device.

Appendix E, Image 4: screenshot of simulated view of mobile device accessing page from QR code.

In the case of this immersive installation being set up in an existing venue, the stickers on the floor could function as an invitation towards the toilets, in the sense that the people who regularly use the facilities will notice the stickers being a new addition and their curiosity will hopefully lead them to discover what else has changed. The sticker that is at the front of the queue is strategically placed in a spot where the person standing on it can a) read the installation description text, and b) scan the QR code.

Appendix E, Images 6 and 7: Stickers on the floor to indicate queuing and visitors queuing to access the toilet facilities.

The installation description text is the following:

How do we encounter the invisibilities of other people’s experiences?

Crohn’s Disease and Ulcerative Colitis two autoimmune Inflammatory Bowel Diseases (IBD) are considered invisible conditions because people living with them do not have any immediately obvious external signifiers. The physical effects, combined with the invisibility of the condition may lead the individual to question their own identity, or to self exclusion from social interactions. Through increased awareness and education on IBD, the occurrence of stigma could potentially be minimized.

This immersive installation is the result of a participatory research project that explores social stigma among women with IBD in England.

You are invited to look beyond closed doors and reflect on the things we see but ignore, as well as the things we intentionally hide from sight.

Sylvia Kouveli

But you don’t look ill, 2022 Mixed media installation

Appendix E, Image 8a: View of installation’s description text, on site at the toilet facilities of an office space.

Appendix E, Image 8b:

View of installation’s description text, within an exhibition setting. A light was positioned above the mirror so that when you approach to read the text, you see yourself reflected in the mirror through it.

Below are the phrases that were used on the stall partition walls and door. They are categorized by theme (identity, self exclusion, invisibility), and each colour represents the voice of a specific participant.

IDENTITY

o It’s difficult to come to terms with who I thought I was and who I try and should be

o [PACKMAN] This is me with a bag over my head pretending it’s not happening, wanting to go out and live my life as everyone else is

o FALLURE

o What fresh hell is this?

o I can’t believe this is my life.

o Sometimes it feels like you’re having the worst hangover of your life with the worst tiredness of your life oh, and you’re shitting yourself!

o It's fashionable to be diverse

o I felt like I was a real failure

o friends & family were grateful for the diagnosis because it wasn’t cancer

HELLO?! I’VE GOT A CHRONIC CONDITION

o On a form when it says “do you have a disability?”

I never tick that box

o I felt a bit like a failure

o Who am I?

o I had a massive identity crisis

o I don’t want to be known as Sore Ass Sue like my auntie!

o I feel like a completely different person

o not feeling very feminine when your bum’s falling out

o I’m imperfect [WINGS]

o Sometimes I feel like a fraud because I don’t have symptoms as bad as some people have them

o Put on a brave face

o alone

o scared

o Who am I?

o I’ve always been a little social butterfly [BUTTERFLY]

o Every time I looked at the mirror I just wanted to cry

o During the day I can be 4 different dress sizes because of the blOAting so I had to really think about what I’m wearing to work

o My only other option is to take early retirement then

SELF EXCLUSION

o I don’t want to have to degrade myself to get a parking space at work

o It was humiliating internally to know the reason why I wasn’t there

o You live in fear of being challenged It prevents you using things you’re meant to use

o going to the beach was a challenge

o One of my worst fears: traveling and not having facilities (so I travel a lot less)

o I love to hike & walk, that has been reduced almost to nothing

o I didn’t want to leave the house, I felt so horrible

o I barely saw my friends and I just felt like I wanted to stay inside the house and keep to myself

o I sort of convinced myself that I wasn’t any fun to be around

o I don’t want to make anyone feel uncomfortable, especially when it’s because of my disease

o After a while you feel a bit left out of everything but you are leaving yourself out

o I volunteered at a charity... but suddenly I thought I don’t want to tell you people that I can’t do this or why

INVISIBILITY

o It is an invisible disability and it is very much invisible in the health care world

o My managers knew what was going on, they knew the medication I was on but I still got penalized for time off

o People just didn’t understand

o I’ve spent a lot of money in café bars because I needed to use their toilets

o We’ve got better at the idea that not all disabilities are visible

o People didn’t understand why I had to be so careful with COVID because I didn’t look ill

o How are you supposed to understand something that you can’t see?

o I might look alright, but I’m not ok

o On the face of it, I looked alright

o You actually want to be not noticeable, until you need to be noticeable.

EXTRAS

[VOLCANO] oh, not again

[FLOWER GRASS] < my happy place

Appendix E, Images 9a and 9b: The participant quotes in different colours and handwriting styles, on the walls and door of the toilet stall, installed in existing facilities in an office (above), and in a constructed stall withing an exhibition (below).

In the following photos you could see some elements that were taken from the participants’ Rivers of Life and photographic portraits and incorporated into the phrases and doodles that were scribbled in the toilet stall walls and door.

Appendix E, Images 10, 11, 12, 13:

Displaying which elements of the Rivers of Life and portraits were incorporated into the immersive installation.

Appendix F. Data Analysis

I used a constant comparative method based on grounded theory to suggest an interpretative analysis of the data collected. I reviewed and re reviewed the audio recordings of the interviews, focus group, and River of Life descriptions, focusing on the participants’ concerns and trying to identify the concepts that emerged from the data. I used a colour coding process to identify and note key phrases that fed into central concepts of the research. A second phase of coding followed, where specific quotes were categorized within the key findings.

Below are examples of my coding and analysis process.

Appendix F, Image 1: Initial stage of identifying the themes of identity, denial, fear, failure, hobbies, friends and family, intimacy, motherhood, isolation, and colour coding them.

Appendix F, Image 2: Tagging specific quotes from participants that fit into the themes of identity, invisibility, self exclusion, and education.

Appendix G. Audio Recordings and Release Forms

The audio recordings of the interviews, the focus group session, and the descriptions of each of the participants’ River of Life can be found in this link:

The participant release forms can be found in this link: