I discovered I had HIV by chance in 1985 when I was sent a double-sided diet sheet by the hospital. On one side it said, ‘This is what to eat if you are HIV positive’ and on the other, ‘This is what to eat if you have AIDS’. They just assumed that somebody had told me that I had HIV.
I phoned the haematology unit, who refused to talk about it over the phone. In the end, I had a two-minute appointment with the consultant, who said: “You have got hepatitis B and HIV. Go away and enjoy yourself but don’t have sex.” I was just 18 and it didn’t seem real.
In 1985, HIV was a death sentence. There was no support or counselling. You were left to get on with it. My way of coping was to try to forget about it. I would go to work then out to the pub and stay there until I was chucked out. I didn’t imagine I would ever meet anyone, let alone get married.
I never really thought about death or dying. I suppose I just stuck my head in the sand. I told my mother, who thought it was the end of the world, and a few close relatives, but I didn’t tell any of my friends for three or four years.
I met my wife, Caroline, in 1989. I didn’t tell her I had HIV at first as I was afraid she would reject me. I didn’t know that my cousin, whom I met Caroline through, had already told her. At first we were just friends, but one night as we were becoming closer she asked me about it.
I was so afraid she would push me away that I tried to deny it, but eventually I told her that I had HIV and she may as well leave now. But she didn’t and we talked and cried about it until about 4am. She didn’t seem that shocked, but was very upset and felt the injustice of it all. I think she had already read up on HIV before she confronted me so had some knowledge.
We’ve always had protected sex but my HIV status has never stopped us doing anything. It’s important to always protect yourself and the other person. We are all responsible for our own sexual health and if you have HIV, it is your responsibility to always use a condom.
We got married in August 1990. Caroline told her parents about my HIV as I chickened out of the task. They were shocked and devastated but were fully supportive of our relationship. At first we lived from birthday to birthday and Christmas to Christmas. I would go to the hospital every two or three months and they would say, ‘You’ve got another two or three years’, until around the mid-90s.
But there was to be another blow. In 1994, I was sent a letter telling me that I had tested positive for hepatitis C. Understandably, I felt very angry but not really that surprised. I suspect they knew I had hep C back in the early 80s. I had treatment for it but, unfortunately, it failed. I approached the treatment thinking that it wouldn’t work. That way, I wouldn’t be too disappointed when it didn’t. So I really wasn’t too bothered.
I decided to start treatment for my HIV in 1996 because we wanted to try for a baby. I think I may be one of the lucky ones. I never had any major side effects. I had some internal bleeding with one of the drugs but they changed them and I was fine. Well, I say fine, but I just had what I would call the normal side effects that most people get: nausea, joint pain, lethargy, dodgy bowel movements. We’ve had several tries at fertility treatment but without success and have now decided to give up.
I have had a few life-threatening moments. They make you see things in a different light. Some of these have been caused by my haemophilia, which was a shock as I had spent so many years worrying and concentrating on my HIV status that I had forgotten my haemophilia could kill me.
Having HIV was occasionally debilitating, physically and mentally. At one point, I had a problem with the muscles in my arms, which was put down to the HIV. I couldn’t raise my arms above my head. I couldn’t hold anything tight including cups, or even peel a potato. I have had three bouts of intussusception, which again, I was told, was down to the HIV. But it’s not a death sentence any more. As a haemophiliac, I tend to be seen as a victim, unlike people who have contracted HIV sexually, who tend to be blamed. But the truth is, it is no one’s fault – no one set out to give me HIV.
Having HIV is not the end of the world, although I do have dark moments, especially if things go wrong. It does affect my life. I can’t get life insurance, although I have been able to get a mortgage. There is also the issue of who to tell. Due to the stigma that comes with HIV, you have to be careful who you tell. But to be honest, who really needs to know? If you were asthmatic, you wouldn’t tell everyone, so why would you if you had HIV? In the past I didn’t tell employers, although these days I am open about it.
We used to foster teenagers and the team knew about my HIV status. When deciding whether to tell people, think about who needs to know. Obviously your partner and your children and maybe a close friend or two, but people who are not close don’t need to know. You are not putting them at risk.
The more people who are open about HIV, the less stigma there will be. I went public with my condition in 2000 and am at the point now where I really don’t care who knows about my status. I often do radio, television and newspaper interviews. I feel that unless you are open about your status, nothing will really change. If you hide your HIV status in a dark corner, that’s where you’ll feel you are. [Thanks to NHS Choices]