Where to start..... So it was a funny one because after I lost my lover to AIDS back in 1992, it made me a lot more serious about having protected sex and safe sex, so I was being a lot more careful when it happened in 96. At that time I was in a relationship with somebody - which was quite tempestuous and volatile. We would often row, break up and get back together - that sort of thing, and we had a big bust up - break up, so I went out drinking with my best friend. I had quite a bit to drink when I saw this guy in the club who I quite fancied, so I went back with him and - you know - we were in bed and started having sex. When it then came to penetrative sex, I ask if he had any condoms, upon which he said “No”. So I said “Well I’ve got some”, as I was carrying them at the time, so I got up to get them out of my trouser pocket and came back into the bedroom. Then he said that it wasn’t just that he doesn’t have any condoms - he doesn’t like using them. So I was like “Oh, well I actually prefer to use them, so I guess we just won’t do that.” So we carried on and it became clear that he wanted to have penetrative sex - I was of course hesitant, umming and ahhing, and then eventually just thought “I’ve had a couple mistakes in the past and it turned out to be nothing, I got away with it”, so I thought “I’m sure I’ll get away with it again”, so I agreed and we had sex.
One of the really weird things for me is that the sex was amazing. It was some of the best sex I ever had in my life. We literally shagged all night till the morning. But afterwards, in the morning, as soon as I woke up I knew. I knew something had happened because I felt something in my system. It was like suddenly something was alive inside me - like something had entered my system and my body had gone into alert - like combat mode - like something had entered and it had to fight it off, but in a much more dramatic way than when you get a cold or a flu. It was like “Shit what the hell is this?” I was quite shocked by that and knew I had to go home and wait till I seroconvert, because I knew that’s how it went with the whole HIV AIDS thing - and I heard it would happen in about three weeks or something. It was either 13 or 18 days later, I had these flu symptoms and I was like “Right, this is probably it” so I waited a couple of days after that and then I went and had a HIV test - and sure enough it came back positive. Back in those days you had to wait a couple of weeks for the result to come in, but I kind of knew all along and what was also frustrating for me was, prior to this happening - it happened when I was 29, when I was about 27, I had gone out with this guy who was a cardiac nurse and he told me that what we now call PEP was already available - Post Exposure Prophylaxis, that they would give to doctors, nurses or policemen if they got bitten or had a needle stick or something. They would be given HIV meds to stop the virus from taking hold, so I knew that this medication was out there - that could have stopped me from getting this virus. I just couldn’t get it - it wasn’t made available to me. I remember feeling very powerless and also very angry about it. Once the seroconversion had happened I was like “Well that’s it, I’m going to die.” My initial reaction was - and that really surprised me - I went into this whole “Fuck it” mode, “If I’m going to die I may as well enjoy myself and I may as well go out with a bang.” So I was going out all the time, drinking a lot, taking drugs and stuff and having lots of sex. I met somebody and started going out with them and they were very into sex and drugs, but one day I woke up and realised “This just isn’t me, this isn’t who I am as a person.” I remember looking at the guy I was with and thinking “If I wasn’t HIV positive, If I wasn’t in this frame of mind I wouldn’t be going out with him.” It was just because I was HIV and thought I was going to die. I wasn’t being authentic or honest to my integrity, so “I can’t do this”.
So I decided to go the other way and started to really look after myself. It was almost like deciding to live. “I’m not going to let this thing kill me and I’m not going to let this thing win.” Also I had a very good doctor at the time, and I had this feeling that I didn’t want my CD4 levels to go down too low and I talked to her about it, because - back in the day, the meds were quite toxic within themselves, so they used to wait until people’s CD4 levels got really low - like under 150 before putting them on the medication - so I said I didn’t want it to go much below 400 or 350, so she agreed. The first medication that I started on, I had just gone on holiday with a friend, and I remember my friend had fallen in love with some bloke which is why we went there and they fell out on the first day, so he was in a mood. I had a really bad reaction to the drugs I was on, I had a lot of pain in my stomach and I had a lot of panic because back then there were maybe only two or three different types of drugs - no not even three, so I was kinda like “Shit, if these drugs don’t work I’ll die.” I just remember looking out in to the night sky thinking “What if this is it?” It was one of those moments of contemplating my own mortality - it does really change you.
When I got back they put me on another set of drugs which thankfully worked. My CD4 levels got back up to maybe 800 or 1000 even. The virus was undetectable in my body, so I was very relieved and pleased. Even back then there were loads of side effects because the drugs had AZT in them which caused the redistribution of fat in your body, which was when people had the really sunken faces and looked really skeletal. They really were quite toxic, but at least it bought me a bit of time.
Growing up, especially in the 70’s and 80’sBack then, I didn’t know if I would reach 30. I didn’t know if I would reach the Millennium. But now I’m 52 and its like - at one stage - that was all time, I never thought I would have, which has a kind of double effect, because on the
there was this big thing about the millennium - how things were going to change, and I remember when I got diagnosed just thinking what if I don’t reach the millennium? And that was quite strange because as a child I had always really looked forward to it. So, my goal in the early days was just to get to the millennium. I didn’t think much beyond that, and then the millennium came and went and I was like “Oh now what?” (laughter).
On the one hand it’s something to be really grateful for, but on the other hand there’s almost something surreal about it - living in time you didn’t think you’d have. It’s also that thing about remembering all the people who aren’t around. I was talking to someone the other day about Tony my lover that died - that how grieving is not something that actually gets easier, or fades - that over time it actually gets deeper. Now we have mobile phones and the internet, and I think to myself how Tony would have loved these things - fashion or pop videos. Tony was such a creative he would have loved all this stuff today and there’s that kind of sadness that he didn’t get to live through all of this.
For some time there was this survivor guilt. You hear people talk about that when people were dying especially in the 90’s where a lot of my loved ones were dying, so when I lived, there was a sense of “How come I lived and they didn’t?” I think for me, it was especially with all the creative people like artists and musicians and singers like Freddy Mercury and Keith Haring - people like that were incredible. Also people behind the scenes who were so influential who just all died and I was a nobody. “Why?” (breaks into tears) “Why do I get to survive these things and other people didn’t?” That was quite hard but I did get counselling which was very helpful - which made me want to be a counsellor myself because I thought it was a really difficult thing to go through - because people had helped me and I think I wanted to give something back and help other men so they didn’t have to go through some of the pain, fear and guilt that I went through. So I tried being a counsellor and worked at the Health Gay Living centre, and I worked for the Terrence Higgins trust, working with newly diagnosed gay men, and people living with HIV. As part of my training, I had a lot of therapy - I mean I had to. I brought something positive out of it - I felt like all the pain and the fear and everything I went through gave me a kind of deeper understanding and ability to be able to empathise with people when they were first going through it themselves - I knew how scary that was.
I mean now, with the new drugs, people have longer lives, but I don’t think people really understand how scary it all is when they’re told of this illness. There’s a lot of focus on it being a manageable illness but it’s still a terminal illness. It kills people eventually. I mean ok, it takes a lot longer to kill people, but it does kill people and people do still die of AIDS. Being told you have a terminal illness, no matter how long they say it’s going to be before you die, it does make you face your own mortality. You have to consider getting ill and dying and the impact that will have on your friends and family - and it’s scary. Especially back in the day, it was only in 96 when the first combination therapies were becoming available, so I was just on the cusp really. But what was also funny, was that I have two friends who I’ve known since that time who didn’t get tested and wouldn’t, but they knew I had HIV and was on medication. I used to encourage them to get tested and they wouldn’t, because there was just so much fear and stigma about it. Eventually they both did get tested and both turned out to be positive and we worked it back to singular incidences.They were both like me at the time it happened - quite careful, would normally have safe sex, and it was only in a drunken moment or under the influence of drugs, had this one-off slip-up and that was the one. So we all got the virus around the same time, but a decade had gone by before they started the medication. Their CD4 levels were both really low around 50 and even when they started the medication, their CD4 levels never bounced back the way mine did - so that made me really glad I listened to that voice in my head at the time I went on the medication early.
Now of course all that’s changed. They put people on medication straight away and don’t wait till it’s below 150, because they realised that if you’ve damaged your immune system then it doesn’t bounce back for life, and the healthier you can keep people, the better really.
HOW DO WE GET RID OF THE STIGMA
I think the primal fear is fear of death, so that’s a difficult one. As a species we’re all about survival. That’s why we’re the dominant species - because survival is our driving force. So anything that potentially threatens our survival creates a big fear in us. It’s not confined to people with HIV, even if someone has cancer, you go round someone’s house who has cancer and you won’t have a cup of tea because somewhere inside you’re afraid. (laughs) I mean you can’t catch cancer from a cup of tea, but it’s the same thing with HIV and AIDS - anything that can potentially kill us. People’s reactions are always more extreme than they need to be. So that’s one thing that’s hard to change. So one of the things around that, is reinforcing the fact that it’s not contagious. I was talking to someone the other day about what a massive difference it made when Diana went to the hospital - and there was that photograph of Diana holding hands with a man who was clearly dying of AIDS - and that changed the playing field. People need visual cues and visual clues, they need people that they trusted - like everyone loved Diana. So if Diana can touch a man with AIDS then we can. It sounds simplistic but that’s kind of how humans work. So it has to be kind of normalised but in a kind of overt way.
And the other thing is, because aids is synonymous with a very awful period of time where people died in really horrible ways - very painfully from horrible illnesses that people don’t usually get because their immune systems were trashed - so it’s synonymous with pain and suffering. We really need to move away from those words like AIDS and HIV. You know how Gregg was talking about rebranding. It’s a funny one because AIDS is linked to HIV, but nobody likes talking about AIDS - so we just talk about HIV. Everybody knows that HIV leads to AIDS, so even when people say HIV they’re thinking AIDS in their heads. So we really need a complete rebrand. And then there’s the survivor part of me that doesn’t want to erase that part. I don’t want people to forget about AIDS and how horrible it was and how many people died, because I’m scared that if we rebrand it that those people might get forgotten. So it’s a tough call really. Things like the AIDS memorial is really important and we do need to acknowledge it, so it really is a tough one.
Moving forward we have to do something, even calling it something else would help.