Embarrassing Illnesses

Michael Edwards contracted HIV in 1990. He is now 62 and is still working and leading a healthy life

“The first sign was a bad dose of flu. Like me, my GP is gay and he suspected that I had contracted HIV. I flew down to St Mary’s Hospital and had a test, which proved positive. Unusually, I contracted HIV through oral sex â€" probably because I had bleeding gums.

"I work at the London Lighthouse (HIV/AIDS charity) and, I think because of that, I didn’t have the same pressures that many people do. The main issue for me was telling my family. My father had died by the time I was diagnosed. I told my sister, but I was worried about telling my mum. Shortly afterwards, however, she got ill and died so she never had to know.

"At that time, before effective medication, people were dying all the time and I didn’t have much time to think about my own situation. I started on medication in the late 90s. It took me a year to decide to go on it but I have had no regrets. My T cell count immediately went down and my viral load became indetectable (no virus could be detected in the bloodstream). I was lucky in that I didn’t have any side effects worth talking about. The only thing I noticed was that if I didn’t have breakfast I felt sick.

"I am now on my second lot of treatment having had a treatment break of a year, and I am finding adherence more difficult. The main problem is nausea, but I find the more I eat, the better I respond.

"Coping with HIV is very much a matter of attitude. There is still a stigma attached to it, maybe not as much in the 1980s, but it is still there. When I do talks, I always say, 'It’s not just a question of sleeping around. It’s like getting pregnant; if you have sex the risk is there.' We have rotten sex education in this country. We need to get better and make sure that kids are informed. Parents need to take on board that their children are having sex and to make sure that they are doing it safely and have the information to protect themselves.

"As far as telling sexual partners is concerned I find it better to tell them I have HIV straight away rather than get a couple of months down the line and have them find out. Some people do reject you and that can be hard, but I still believe it is better to be open. Some people find it easier with internet dating services to put their HIV status on their profile so they don’t have to do it face to face. Different things work for different people. As for me I don’t care who knows.

"Things have moved on a lot since I was diagnosed. These days in the west (although not in Africa) people are living with HIV rather than dying from it. In the old days the main challenge was deciding who to tell. It was difficult especially as some of my friends didn’t want to know when they discovered. As the problem got more widespread and more people had HIV, however, many of those who wouldn’t give me the time of day when I was first diagnosed changed their tune.

"There is still is a certain amount of prejudice within the gay community, but things are better. Having said that, things haven’t changed completely and they won’t until people change their attitudes and condom wearing becomes second nature.

"With the advent of medication a lot of complacency exists. There is the attitude that you just take a pill and you are OK. It isn’t quite like that. We have got to get across the seriousness of HIV and make people realise that it is not just a problem that affects gay men, it’s everybody’s problem.”