'Having HIV is not the end of the world'

Mick Mason, who has haemophilia, caught HIV and hepatitis in the early 1980s from contaminated blood products.

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 Ihad 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 dont have sex. I was just 18 anditdidn'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 didnt imagine I would ever meet anyone, let alone get married.

"I never really thought about death or dying. I supposeI 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 didnt tell any of my friends for three or four years.

"I met my wife, Caroline, in 1989. I didnt tell her Ihad HIV at first as I was afraid she would reject me. I didn't knowthat my cousin, whom I metCaroline 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 Ihad HIV and she may as well leave now. But she didnt and we talked and cried about it until about 4am.She didnt 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.

"Weve always had protected sex but my HIV status has never stopped us doing anything. Its important to always protect yourself and the other person. We are all responsible for our own sexual health and if youhave 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, Youve 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 thatit wouldnt work.That way, I wouldnt be too disappointed when it didnt. So I really wasnt 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, butI just had what I would call the normal side effects that most people get: nausea, joint pain, lethargy, dodgy bowel movements. Weve 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, whichwas put down to the HIV.I couldnt raisemy armsabove my head. I couldnt 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 its 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 ones 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 cant 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 wouldnt tell everyone, so why would you if youhad HIV? In the past I didnt 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 aboutwho needs to know. Obviously your partner and your children and maybe a close friend or two, but people who are not close dont 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 dont 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.

Content supplied by the NHS Website

Medically Reviewed by a doctor on 4 Jun 2015