Surviving a death sentence

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14 Jun 2017

Jonathan, diagnosed 1984

It's so horrific looking back. I don't look back very often. It's hard to conceive that it was actually all happening. You'd get phone calls to say: “So and so is ill,” and it wasn't that they were ill — they were dying. And you would see them dying. Over the course of a couple of years, you would see them wasting away; you'd go to see them in hospital and you'd go to their funerals. And it was one after another. I don't know how we did it. Most of the people I knew, most of my friends, died. I was talking to another friend of mine recently who's also got HIV, and who's also one of us long-term survivors, and he said that although we're well and there are treatments, there isn't a single day that goes by without you having been affected by it.

Phil, diagnosed 1985

When I was diagnosed, a long-term survivor was someone who lived 12 months, and most people were dead in six months. It was not a question of if you were going to die — it was a question of when you were going to die. And so there was no expectation that someone would live as long as I have lived.

Kim, diagnosed 1992

When I got the ‘confirmation’, I felt my life was over. I can remember looking at my cat and wondering what would happen to her when I died. I was contemplating about to whom I should give my possessions. I wondered how I could possibly even be remembered on this planet or leave any type of legacy at all, being unmarried, childless and doomed to stay that way for the remainder of my painful, pitiful days.

Bob, diagnosed 1993

Remember, in those days we’re talking about, [HIV] was a death sentence. And since then, we’ve had to go through this period where, after treatment, suddenly it wasn’t a death sentence. That’s a — I use the expression ‘mind-fuck’ for want of a better word. It is! It’s a crazy, crazy thing to negotiate. Looking back, you wonder why you were so lucky. It really was just luck. It’s just a matter of timing. If I had been diagnosed, say, in 1990 or 1991, my story would be very different, because treatment would probably come too late.

Jim, diagnosed 1989

I asked my doctor to test me for HIV. By this point, I had lost 50 friends to AIDS. Because I had lost so many people I was sexually related to, I knew that the test would come back positive. Yet, I was still stunned. I was really scared. I thought I was going to die like all of my friends and that my plans were never going to happen. I had always thought that my health was my most important asset. Now I had a disease that always ended in death. The impact was so devastating; the fear was so overwhelming that I didn’t tell anyone.

Jonathan, diagnosed 1982

The only thing that stopped me committing suicide was that I couldn’t bear the thought of someone clearing up my mess! It was 1982, and I’d been to my GP with the kind of swollen glands that hurt when you shook hands with someone. Tests showed I had HTLV3, the original name for HIV. At the time there was all this news filtering in from the US about a mystery illness – that it was terrifying, and terminal. If I can’t kill myself, I thought, I’d better just get on with it.

Vickie, diagnosed 1985

Those living with HIV today can never imagine the horrors many of us had to endure in the early days of this epidemic. I wish I didn't remember; I wish I could forget. Too many died too soon. The pain and fear were unbearable, but we stood as a community — a united front. Always supporting one another, as there were few who dared to support us. We were a group of people who were willing to stand up for ourselves and for others, and face what the world had to offer. There were very few women then who were willing to come forward. And at times, I felt like the only woman in the world who was living with HIV. It was difficult then and is still difficult today.

Steve, diagnosed 1987

Back then, they gave us five years at the most. I made it through, but I’ve got many health problems, mainly due to the medication I took. The damage to my body is nobody’s fault — the doctors didn’t know what they were dealing with, and the drugs were so strong. You could say I fell out of the side-effect tree and hit every branch on the way down. I’ve done a lot of grieving, lost a lot of friends and lovers. It’s not easy and it’s often lonely. I’m still here, though, 30 years on. Am I tough? Not really. I think I’ve just been lucky.