In 1996, my partner and I had been together for 8 years. My ex-partner had died the year before of an AIDS related illness. We were at that years Gay Pride, and I met an old girlfriend, who informed me that Tom, a friend of both of us, had also died. This meant that out of a group of 25 friends, there was only me and one other still alive. My partner and I decided that now was the time to be tested.

We met the HIV Social Worker; we met the staff from the Devon AIDS Association, and the health advisor from the GUM clinic, where we received pre-test counselling. The test was done, and we waited two weeks for the result. We went in to the clinic, and saw another health advisor, to whom we had not been introduced. She looked at Peter, my partner, and said, ‘Lindsay, I’m afraid your test had come back positive’. She then looked at me and said, ‘Peter, yours is negative.’ The worst scenario possible has just happened for us. One of us had a death sentence, and the other was OK. But which one of us? Had she just got our faces mixed up? Did she mean Peter was positive and me not, or the other way round? It soon became evident that it was me who was positive. I had AIDS. I was going to die. It didn’t really sink in. I was more concerned with Peter. He was devastated. How could I have done this to him?

Each night, when I went to bed, I told myself, ‘You are going to die.’ ‘When is it going to happen?’ ‘How is it going to happen?’ ‘You are going to die and leave Peter behind, alone.’ I had never known such fear, and it was never going to end.

I had a very low CD4 count from the start, Viral load testing still years away. I had no idea how poorly I was. I had been positive for about ten years before I tested. I soon contracted some conditions associated with a compromised immune system. I had shingles, and soon after thrombocytopenia, a dangerously low platelet count. Just being touched would make me bruise, and there was a risk of internal bleeding which would not heal. I was in hospital for a week. I saw my GP soon after, and when he suggested I should visit a hospice to see if I liked it, and said I was within a week of dying, I truly grasped the gravity of what had happened. My GP gave me a DS1500 form, which in essence said I had about 6 months, and fast tracked my claim for Disability Living Allowance. I was medically retired from work, and tried to make my last few months as full as possible. I wanted to spend as much time as I could with Peter, and snuggle up in the home we had made together.

"I had spent the time coming to terms with death, and strangely began to think positively about HIV. It had given me the ability to look at life and appreciate the smallest and simplest things."

My CD4 didn’t improve, but after six months had passed, I was still alive. I had spent the time coming to terms with death, and strangely began to think positively about HIV. It had given me something strange. It had given me the ability to look at life and appreciate the smallest and simplest things. I was able to understand why I was here, and why I was dying. But I didn’t die. I continued, in poor health, true, but I was alive. I still had opportunistic infections as my CD4 was still low.

"One of the biggest difficulties which faces me, and almost everyone else living with HIV, is the stigma which surrounds it."

I was alive, surviving the virus, but now, unable to work due to the disability which HIV can bring, I was surviving on benefits. Thankfully, due to the help of DLA, it wasn’t the struggle one might imagine, as I could afford to lease a car through Motability, and get around, and I could afford to pay for the help I needed for day to day living. The biggest nuisance is the frequent loss of bowel control, and when this happens at night, as it does most nights, it causes a lot of disruption and loss of sleep. But I was alive. Years past, and I past the 5 year threshold to mark a ‘Long Term Survivor’. Life was hard, and the threat of death was still hanging over me. Medical advances had meant there was now more than just the two drugs, as there were when I was diagnosed, available to use. I was given cocktail after cocktail of drugs, a different one each time the previous one failed. The side effects from the drugs became the biggest thing to deal with. I have had three strokes as a side effect, and have developed type II diabetes, lipodystrophy, peripheral neuropathy, and osteopenia, as well as irritating things like stomach cramps, diarrhoea, headaches, and joint and bone pains. But little to worry about when I considered they were keeping me alive. In time most of the drugs had lost their efficacy, and I once again began to think about death. But once again there was a lifeline. Salvage therapy, which more or less does what it says. They threw more than a handful of drugs at me in the hope they might work. They seem to be. After all I am still here.

One of the biggest difficulties which faces me, and almost everyone else living with HIV, is the stigma which surrounds it. There has been, from the earliest days of HIV, a fear that disclosure of one’s status could mean the very worst; physical and mental pain, isolation, the loss of contact with friends and close relatives. This stigma still exists. I can think of no other life threatening condition which is kept secret for fear of the reaction disclosure would cause, and which causes shame and embarrassment. I decided very early on that I would not live in fear, that I would not be ashamed, and that if anyone chose to disown me because of my condition, then it was their loss, not mine. Disclosure is very much like coming out if you are gay. You live, carrying a secret which you know would be better out, but you are scared of the reaction. Once you have said the words to one person, you can’t take it back, so you can’t ask for a friend’s opinion, for example. I told everyone I knew who would be concerned enough to know, and each and every one of them was supportive. I tell others if they ask, but never deny my status. In the 17 years I have been diagnosed, only one person has been a bit iffy about it. This makes me wonder whether we, the ones living with HIV, are the ones perpetuating the stigma. If so, it’s just one more worry for us to carry with us.

"I decided very early on that I would not live in fear, that I would not be ashamed, and that if anyone chose to disown me because of my condition, then it was their loss, not mine."

There are now three things which are of concern to me, apart from the day to day problems of living with HIV.

The first is the group PEGS, a peer support group in Somerset. Without the ability to speak with others who have been, or are going through the same things as me, is probably one of the few things keeping me going.

The second is the change happening to the benefits system at present. Somehow, public opinion of people who are disabled, and have to turn to the state for help, has changed from that of sympathy as assistance, to one where they are looked on as scroungers and being work shy. The safety net is being taken away, and the fear is that it will never come back.

The third is more complicated to explain. When I was first diagnosed, my thoughts were obsessed with my death. It took years to come to terms with it, and I ended up being quite at ease with those thoughts, and was strangely happy. My thoughts now have turned to living. One might imagine that now HIV has become (almost) a manageable chronic condition, I would be ecstatic. The difficulty is that I am finding it hard to come to terms with the fact that I should now live to a reasonable age. I am unable to work, and have been for seventeen years. This has meant I have lost out on the kudos employment brings, all the promotions I could have expected, all the colleagues I would have known, not to say the earning potential I have missed out on.

"HIV has given me an outlook on life which I feel almost privileged to have. But I am alive, and I have Peter by my side."

HIV has given me an outlook on life which I feel almost privileged to have. I am alive and have survived the worst time of AIDS, but almost all of my friends have died. I am alive, but I have lost my life, given up to sickness, pain, and disability. But I am alive, and I have Peter by my side.

Lindsay. Diagnosed 17 years.