‘I’ve lived with HIV for 35 years – but this virus hasn’t beaten me’

These days I live a life you might call ‘cosy’: I’ve been married to my husband, Alan, for 13 years, and I’ve worked for a London council for 20 years. In the 1980s, though, I really did live it up.

I moved to London in 1983 in search of its famous gay nightlife scene – a far cry from my home in the tiny Irish town of Dundalk, where same-sex relationships were still illegal. Most nights, I went out with other guys from the hotel where I got my first job. We would count up our tips, jump in a cab and head to Heaven nightclub, in Charing Cross. We’d party the evening away and make it back in time for our 6am shift the next day.

Everything changed for me in 1986, when I was sitting in Westminster Hospital with the parents of my first boyfriend, Brian. At just 26 he had Aids-related dementia, and as he lay there dying he had no clue who we were. All he could talk about was the helicopter that he was convinced was under his bed. “I can hear it, I can hear it,” he kept saying. Watching what happened to Brian was when I first felt the fear that would haunt me and my friends for decades.

I was diagnosed with HIV a year after Brian died, when I was 28. There are more than 100,000 people in the UK living with HIV today, but long-term HIV survivors like me are few in number. When I caught HIV there was no antidote to this horrible virus, and my doctors had little to offer other than counselling. It felt like a death sentence: you knew that more likely than not, your immune system would give way to a horrible cancer or to pneumonia and it would spell your end.

I’m here to tell the tale because I was lucky. While Brian developed Aids after contracting HIV, I developed what was then known as an Aids-related complex (ARC), which damaged my health but not my life expectancy. 

If it wasn’t for a hunch, brought on by a stubborn cold, I might not have been diagnosed with HIV for many more years. One day after work I got on a bus to St Stephen’s Hospital on Fulham Road and asked for a test. Two weeks later, I got my answer: a doctor told me in a very matter-of-fact way: “You are HIV positive”.

I don’t know who passed the virus on to me; whether it was Brian or someone else. I could have had it for years before I was diagnosed in 1987, the doctor said. I was in shock, and the news had barely sunk in before there came a phone call from my uncle in Ireland two days later. He said, “Gerard, your mum died this morning”. She had had a massive heart attack and passed away within an hour. I was absolutely devastated. I flew home immediately for her funeral, and didn’t even think about the fact I had HIV until I returned to London.

I went back to my job to find a note on my locker, telling me to go and see the food and beverages director. He told me, “We’re going to have to let you go on the grounds that you’re a publicity risk.” 

I had confided in just one colleague about my diagnosis before my mother’s death – we were friends, I thought, always going out for after-work drinks and having a giggle – and she must have told my boss. Having seen what happened to Brian, I was counting myself lucky that I wasn’t seriously ill. It hadn’t occurred to me that having HIV could so completely upend my life in other ways.

The worst part was that my employer wouldn’t provide me with a reference for work at another exclusive hotel, and nowhere would give me a look-in without one. I soon ended up on the streets. I slept in Green Park and St James’s Park, moving about to try and feel safe. 

Eventually, I took up a friend’s spare room in Tottenham, but the minute I had money in my pocket again I turned to drink. I was working in a pub by then, and I’d knock back as many vodka and orange juices as I could before I’d stagger to the nearest off-licence and buy another bottle, waking up in Victoria station half the time instead of my own bed.

Two ways to live

When my friend and his ex-boyfriend reconnected, I had to find somewhere new to live. It was then that I contacted the Haringey HIV and Aids unit. They gave me temporary accommodation within six hours and later provided me with a flat in Tottenham. 

It was at that time that I became a peer supporter for men who had just been diagnosed with HIV, and I soon found that there were two ways to live with this virus. There were those who gave in and holed up in bed, too scared even to leave the house for fear of the course their illness might take; we called that “death by duvet”. Then there were those of us who refused to sit still and wait to die. Despite all I’d been through, I was determined to be in the latter camp.

In the midst of all of this, however, I was constantly getting nasty bugs and mysterious chest infections, what were known then as Aids-defining illnesses. The first proper HIV drug, azidothymidine, was just coming out, and it had horrible side- effects – I tried it for a bit but it gave me kidney and bone damage, and I was left using a walking stick and then a wheelchair. I decided I’d rather live without it. Eventually, my CD4 count, the number of white blood cells in my bloodstream, settled at a fairly normal level, and I ended up mostly asymptomatic.

Other guys I knew got Kaposi’s sarcoma, a horrible cancer that can leave lesions on your face. On New Year’s Eve 1986, just after Brian had died, I was in the queue for Heaven, and a young man came up to me, shook my hand and said, “I’m dying and this is my last night out; I want to make it a good one”. That was the reality of being a gay man then; people seemed to be dropping like flies.

Party atmosphere

In 1992 I was asked to join the board of trustees at The London Lighthouse, which was the world’s biggest residential HIV centre at the time; I stayed there under respite care as well when my health did falter. It sounds crazy, but there was a sort of party atmosphere. We were all young men who were in it together, and lots of us knew each other from the nightlife scene. Lighthouse was visited by Princess Diana many times – there’s a photo of us together – and each time we spoke, she made me feel like she genuinely cared and wanted to be there.

I made a resolution from early in the 1990s to be open about my HIV status, to show that there is no reason to be ashamed. It’s crucial to get tested for HIV if you’re having sex with men, but too many put it off for fear of the truth. 

The ability to be open is a gift, however. I had a network of friends who accepted me, and an understanding employer. My family, too, were supportive. They found out that I had HIV from a TV interview that I gave. My father told me before he died that all he wanted was for me to be happy, that he wasn’t ashamed of me for my sexuality or for my HIV status, and my sister told me how proud she was of me for speaking out.

Others were not so lucky. The stigma of having the “gay disease” broke up families. At St Stephen’s Hospital, where I became outpatient services manager, I saw friends dying whose parents wouldn’t let their partners be there for their final moments. Everyone who lived through that has survivor’s guilt. We’d always be thinking, why was it them and not us? Or, when is it going to be me?

As you might imagine, dating was one of the hardest parts of having HIV as a young man. I always disclosed my HIV status to anyone I might have sex with, and lots of those people weren’t interested in taking precautions like using condoms, so getting a first or second date was difficult. My life changed when I met my husband Alan on a gay chat site. We talked for years before we went on our first date in 2010. We got married in 2014, as soon as it became legal.

Alan doesn’t have HIV, but his family was initially less accepting than mine. By the time I’d met them, though, they had come around to accepting his sexuality. I was nervous to tell them about my HIV status, but all they wanted to know was that I was in good health. 

Today, Alan and I live together in a one-bed flat in North London with our cat, Fluffy. Alan is a DJ and I follow him around the world to go to his gigs, which is not something I’d pictured myself doing when I was told I had HIV all those years ago.

The world has changed enormously since 1987, and medical progress has been nothing short of miraculous. People who think they’ve been exposed to HIV can take pre-exposure prophylaxis (PrEP), which can stop an infection from taking hold. 

Then there are antiretroviral drugs, a combination of which can stop the virus from replicating in your body, preventing further damage. I started taking these drugs again in 2013, when my CD4 count had begun to drop. In just three weeks my count was back to normal and any side-effects had subsided. Now I take just one tablet a day, Biktarvy, which keeps my symptoms at bay.

No one who contracts HIV today needs to go through what I did – there is no more “death by duvet”. The law protects people like me from discrimination: the 2010 Equality Act stops employees from being sacked because of their HIV status, from the moment they are diagnosed. I will always live with this virus, but I have a happy life filled with love and success. In 2023 I can truly say that I control my health and not the other way around.

As told to Lauren Shirreff