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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