Quotes from The People Living with HIV Stigma Index in the UK 2009

1. “For me, HIV is a diagnosis not a lifestyle choice. With medication and support I just get on with it. This research will shake things up a bit and give people’s fears and opinions a timely makeover”
[Participant, September 2009]

2. “I don't need an HIV support group; I need understanding, people to understand I am not going to die from this.”
[Participant, June 2009]

3. “You’re all positive too? OK count me in”
[Participant, June 2009]

4. “It’s a big rollercoaster for me—it’s a journey I will never ever forget. I am not alone. I have been hiding—for what?”
[Researcher, May 2009]

5. “Everything I thought I knew about stigma in the UK and my own stigma I didn’t really know. The deliciousness is in the discovery that you don’t know the answers. It’s been an amazing journey.”
[Alastair, Researcher, October 2009]

6. “When the nurse put on two gloves I was so humiliated, I mean who taught her to do that? If this is going to make a difference you can ask me anything you like.” 
[Participant, May 2009]

7. “As a GP, every time I apply for a job that I am qualified for I dread being asked by my prospective employer what my health background is and whether I am on any medication. When I point out this is contrary to the BMA [British Medical Association] guidelines for best practice, I find myself not shortlisted for an interview.” 
[Participant, June 2009]

8. “I have an undetectable viral load and know my status, how many guys on the scene can honestly say that. I just wish I was able to disclose without so much fear.”
[Participant, August 2009]

9. “There is a need to educate about people’s rights. For one to identify that they have been discriminated against they need to know their rights”
[Researcher, May 2009]

10. “I’ve been involved in gay men’s work for years, but the Stigma Index was the first chance I’ve ever had to sit and learn from other positive people from all backgrounds. It is all about our own experience and feelings around HIV shame and stigma which made it a powerful process. But it’s what we ourselves are going to do about it and that the government is interested in the results that made me feel I really was being listened to.”
[Roy Kilpatrick, HIV Scotland, November 2009]