I got tested for HIV in 1984 and was upset but not surprised by the positive result (Picture: Tony Whitehead)
When I tested HIV positive in 1985 at, I thought I was going to die – and my family did too. That’s what people thought back then.
But although there have been times when I’ve been so ill and in such pain that I really couldn’t care about living or dying – I’d just had enough – I’m grateful to still be alive today thanks to medical advances and the loving support of my partner, Francisco.
I first heard about the virus in 1982, a year after Aids was first clinically recognised. I’d come back to London after a year of working in the Canary Islands as a biology teacher where Aids had escaped my knowledge.
Before the Aids epidemic, I’d had quite a time in London. I transferred from Sussex University in 1976 to complete my Postgraduate Certificate in Education (PGCE) and experienced being an adult for the first time – enjoying parties and having carefree sex – as well as working hard.
But soon it became apparent that young people were catching Aids at the very beginning of their adult lives and dying.
Upon returning to London, HIV/Aids felt unreal for a lot of the community. Some people were terrified, but others hadn’t realised the gravity of the situation yet. Personally, I was chilled to the bone – I felt it was going to affect our community.
In 1982 Terrence Higgins became one of the first known people to die of an Aids-related illness. Although I had never met Terry, I had heard of him because he’d previously been arrested on a demonstration.
I was heavily involved with gay activist groups – notably taking part in demonstrations in 1976 against my former employer, BHS, for discriminating against me due to my sexuality – and at the time I was working for an LGBT+ helpline called Switchboard.
After Terry’s death, his partner Rupert Whittaker, friend Martyn Butler and more friends set up the Terry Higgins Trust to raise money for medical research into Aids and hospital care for those living with the illness, so they arranged a meeting with Switchboard.
I was extremely moved by the accounts of loving and losing somebody I heard there from Terry’s partner and friends. So at the end of the meeting, I got up and said, ‘These guys need support – let’s get together and help them,’ and quite a few people came forward.
Tony Whitehead pictured at a Homosexual Equality demonstration in February 1976 (Picture: Robert Workman Archive, Bishopsgate Institute)
I was then involved with redirecting the focus of the organisation towards support and education for the community, and getting it formally set up as the charity Terrence Higgins Trust.
It was both a privilege to work with this great and diverse group of people, and also deeply, deeply sad – so many of our best friends were getting sick and dying. Helping and supporting each other was an important part of the work in those days.
When the nurse confirmed that I had HIV I was upset but not surprised by the positive result. I had been in New York in 1979 and had had sexual partners there – and more to the point, I thought, ‘Why wouldn’t it be me?’
My way of dealing with it was just to work harder for the Trust, because I was thinking, ‘I’m going to die, but I’m not dead yet and I don’t even feel particularly ill – so go for it!’
I was put on the controversial AZT medication, but after several blood transfusions I had to stop the treatment because it was so awful – I might even have felt better after stopping. But there were no alternative treatment plans at that time, which is why the diagnosis was almost a death sentence.
Then came another bombshell that shook my world. My then-partner George was diagnosed HIV positive in 1987 – he had already been getting progressively more unwell before the test.
In 1989, he died from Aids. I had been taking care of him and was at his bedside in the flat I still live in. I remember it was a summer afternoon because the windows were open and you could hear children playing, which was lovely.
Initially, I was very busy planning the funeral and hosting an all-night vigil for our closest friends. When the undertaker came the next morning, that’s when things began to blur. I’d tried to keep myself occupied to put off dealing with the emotional impact – but the emotional impact does come. I felt so very alone that night.
I was completely and utterly worn out from grief, and I didn’t do much for the Trust at that time. But a springtime trip the following year to the Pyrenees mountains finally pulled me through. The stunning landscape reconnected me to the peace and beauty in the world beyond the sadness and darkness that I, and so many others, had been experiencing.
I thought, ‘Right, I’ve got to get on with my life.’ But losing George was such a visceral, draining, mortifying experience that I couldn’t work solely with HIV anymore.
I got another job at the day centre Streetwise Youth in Earl’s Court, which offered holistic support for male sex workers with HIV/Aids support only making up part of my work.
Then, I met my current partner Francisco in 1990 – our paths crossed on the way to work, as our eyes met from across the street. Soon after, we discovered the biggest coincidence – he was sharing a flat with a friend whose job I had taken over at Streetwise. Through them we got to talk and got to know each other, we dated and we fell in love.
Francisco was diagnosed with HIV shortly after we got together. In the 90s, we both fell very ill with Aids – which is the name of the illnesses you get when your immune system has been severely damaged by the HIV virus. I’m convinced I wouldn’t be alive if Francisco hadn’t helped me through it, but somehow we survived.
I’m grateful every day for my partner (Francisco, left) and the way he puts up with me (Picture: Tony Whitehead)
I can’t remember the details of those years – all I know is we were in and out of hospital, and there were drips and tubes and nurses coming into our home. I know this isn’t everybody’s experience, but my treatment was excellent – I credit the medical experts with saving my life.
There were also a lot of pills, and we were so lucky that by 1996, a whole class of life-saving medicines had come along. I doubt we would have pulled through if we’d developed Aids six months or a year earlier.
Now, people don’t have to get ill with HIV/Aids because of the number of very clever interventions. Pre-Exposure Prophylaxis (PrEP) and Post-Exposure Prophylaxis (PEP) – preventative medicines taken before or after exposure to HIV –have been gamechangers.
Also, the ‘Undetectable = Untransmissible’ campaign that explains how the transmission of HIV can be stopped has been important. These are great steps forward, but what we really need is a cure and a vaccine.
Although to the outsider I have ‘got better’, I’m currently on nine pills a day – I’m sick of all of them! – and I’ve been left with a legacy of health problems: I’ve lost my sight quite a bit, need a walking stick, and have suffered from heart disease and small cancers.
Part of me thinks I’ve never quite managed to get over things and that I’m always dragging a shadow behind me. A number from my generation survived, but we’ve been fairly beat up by the whole experience – psychologically, physically, and also economically.
Since battling with Aids, I never really got back into a paid job and I hadn’t made any savings plans as I didn’t expect to reach 67 years old. Then I suddenly hit retirement age with virtually no pension, without a home of my own, and in bad health – consequently, I’ve had to deal with the benefits system ever since.
I hadn’t made any plans as I didn’t expect to get to 67 years old (Picture: Tony Whitehead)
But there have been lots of amazing, heart-warming stories among the tough times. I went to so many funerals that were wonderful celebrations of people’s lives.
Rather than a wake, we would often have a party where people would get dressed up and listen to disco music. Although it is true that a lot of families rejected their children who had Aids, I do remember times when the disease brought families and communities together, and when funerals became welcoming spaces that reunited families.
It’s like what some people say about the Covid-19 pandemic: it can bring out the worst in people, but more often it brings out the very best.
I’m happy, I’m grateful every day for Francisco and the way he puts up with me. I’ve been very fortunate with how supportive my parents have been – the only criticism I ever remember was when they saw me on TV.
‘Very interesting,’ my mum said, ‘but why on earth did you wear that shirt?!’
In 1997, I got an MBE and went to Buckingham Palace and met Prince Charles – it was wonderful.
I am delighted to be alive. Alongside Francisco, my allotment brings me a lot of joy, especially in these strange times. The HIV Centre where we usually volunteer in Hammersmith has been closed, but we have been running a food bank there during the pandemic.
And, despite finding it a bit difficult these days, I love to walk, particularly in the park or by the Thames.
Even though it’s sadly not the case in other parts of the world, the public panic around HIV/Aids – and the prejudice that I faced in the 80s – is now much less acute here. It is increasingly rare for homophobic comments to be thrown at me on London streets.
When I was growing up there were no LGBTQ+ role models, so visibility for the community has to be a help, but it can’t be forgotten that members are still struggling.
The LGBTQ+ community itself is more wonderful than I could ever have imagined it would be, and I am deeply grateful to be part of such a vibrant community.
It has been a bumpy ride, but it has been worth it for every life-affirming moment.
As told to Tara Cobham