"The idea of blame, guilt, and shame which I think is what has driven a lot of people within the HIV community to have poor mental health."

“I had been living with HIV unknowingly for quite a few years before my diagnosis nearly 15 years ago. With a late diagnosis there’s a lot to contend with, because it’s not just the physical aspect of it that you have to deal with, but also the possibility that I could have passed this on without knowing it. There was a huge amount of physical symptoms going on at the time- I weighed nine stone, my hair had started falling out, I had paper cuts that wouldn’t heal, all of that stuff, but the mental side of things was extremely difficult to contend with. There was definitely a lot of self-stigmatising going on, and I really had to pull myself back from that shame cliff.

I never knowingly slept with someone who was HIV positive, and I think that brings to light the fact that so many people just don’t know their status. Because of my diagnosis, I ended up linking up with someone who I’d been with before I knew my status, and he was also HIV positive by that point. It was actually quite nice to have that conversation, because neither of us knew who gave it to who, and we connected without blame. It is the idea of blame, guilt, and shame which I think is what has driven a lot of people within the HIV community to have poor mental health. I mean, it’s so problematic that we still have a law that criminalises people for passing on HIV to someone else. I know it’s been very rarely used, but the fact that’s on the books is disgusting. I mean, where does it stop? If you know you’ve got a gene that you could pass on that gives your child a life limiting illness, and you have that child, could you go to prison?

I didn’t really think twice about telling people I was HIV positive, I just knew I didn’t want to be hiding away. I knew that if I kept it a secret, I would fall into a black hole of shame and I was adamant I didn’t want to go down that route. The reaction to telling folk was quite varied. I was surprised by the people who were accepting of it and disappointed by those who weren’t. I think for my mum in particular, I knew this was something she was very worried about when I came out as gay, and I really struggled with the idea that I was proving her right. That was tough.

The social stigma around HIV is still very much there, unfortunately. I think that’s a big reason why so many people aren’t going to get tested as often as they should. I mean, I had an instance at my GP practice where I went in to get the winter flu jab, and the nurse who was administering it said to me ‘well, you look like a fit and healthy young man, why are you getting the flu jab?’, and I said, ‘well actually I’m HIV positive’. She looked at me in quite a patronising way and said, ‘oh, well if you’d told me that I would have worn gloves’. That was very disappointing to have that happen. So it’s not surprise that people still fear getting tested because the stigma is very much alive when people are still experiencing things like that.

I got involved with Terrence Higgins Trust pretty quickly after my diagnosis. It took me quite a while to physically recover after getting out of the hospital but then I started volunteering with them and, something that I’m very proud of was that I organised the first Terrence Higgins Trust Pride event in Scotland.

There are so many other ways that people experience life with HIV, which are completely different to mine. There are, unfortunately, some very distinct communities that have such different experiences, such as black African women and substance users, but we need to get to a point where we can move past all of the social stigma because HIV is ultimately just a health condition like any other.

---

David’s story is part of the H is for Human series, in collaboration with the Terrence Higgins Trust, sharing stories of strength, courage and hope from four decades of HIV in Scotland.

For more information on Terrence Higgins Trust and to learn about the work they do, follow this link.

End of page.