World AIDS Day: Man diagnosed with HIV 40 years ago still living glorious, full life

It has been almost 40 years since Jonathan Blake was diagnosed with HIV – and yet, he’s still living a glorious, full life all these years later.

Not everyone can pinpoint the exact time they contracted HIV, but Jonathan thinks he has a fair idea of when he picked up the virus. In 1981, he visited San Francisco for a friend’s wedding. While there, he visited bathhouses and had a glorious time celebrating his sexuality. 

The following year, he visited a doctor after developing painful, enlarged lymph nodes. That led to him being diagnosed with HIV, making him one of the first people diagnosed with the virus in the UK.

Jonathan’s story plays out in the 2021 Sky documentary Positive. The three-part series delves into the start of the AIDS epidemic in the UK through the eyes of people who experienced it directly – Jonathan and others share their stories of living with HIV, while LGBT+ rights activists weigh in to reflect on the vicious, judgemental culture that grew out of the crisis.

“Before there was this pandemic, we were blithely ignorant and delightfully hedonistic,” Jonathan tells PinkNews. “Everyone was having an amazing time. They were really interesting years, the 70s certainly were a period where gay liberation was building in London. There was a great sense of freedom that we were sort of achieving things, and of course, exploring all things sexual.”

At that time, Jonathan was a struggling actor who was working in a restaurant in London called Joe Allen’s. There, he met other young gay men who wanted to explore the city’s gay scene.

“It was amazing, and every night after we had finished work there, a group of us would go down and we would dance at Heaven. It was our way of just unwinding. They were really great, empowering years,” he recalls. 

HIV was already spreading rapidly through the gay community

Tragically, the glory days didn’t last. A mysterious virus was spreading through the gay community – nobody knew what it was, and its full effects were yet to be felt. When Jonathan visited San Francisco in 1981, there was “no sense of disease,” he says – but there was “beginning to be something in the air”. 

“At that point, I really didn’t think much of it. One has to remember, of course, that there weren’t mobile phones and there weren’t computers, so one was dealing with landlines or letters in terms of communication. So it’s very slow. Around early 1982, there was beginning to be soundings that something was amiss – that there were young men who were falling ill to this mystery disease.”

Jonathan continued working at Joe Allen’s – and then, one day, he realised that every single lymph node in his body was “erupting”. The result was that he could barely put his arms down by his sides. He was “walking like a gorilla”. He quickly made an appointment to see his GP. 

“I was living in the East End. I made an appointment to go and see her and I remember, as I walked into the room, she stood up and she said, ‘Shake my hand,’ and as I went to shake her hand she felt the lymph node in the crook of my elbow. It was really painful – I went, ‘Ow! What did you do that for?’ She said, ‘That’s the sailors’ handshake – whenever the sailors went into port, the women or the men they were going with would shake their hands and feel that lymph node, and if that was up, it was a sign of syphilis and they wouldn’t go with them.’”

Jonathan’s GP urged him to go for a check-up at a sexual health clinic. Shortly afterwards, he checked into the Middlesex Hospital for tests.

“I arrived there and they were just all over me – they wanted to do a biopsy. In those days, if you were taken in as an inpatient, if you were a gay man, you were put on a sideboard – they didn’t want homosexuality to infect. I mean, it was crazy – absolutely crazy. I remember being in this sideboard and there was one other person in there, and he was unbelievably unwell – you got that sense he was on the way out. And I suddenly realised that I actually knew this person.

I remember that I left there and went back to my flat in the East End and I just closed the door and sunk into this desperate depression.

“When I had been on tour back in 1976, a long way back, we had met in Norwich and had this affair for a week while we were there. And he is lying in one bed and I am in this other waiting to have the biopsy. They did the biopsy and I was held there for two days whilst they got the results. And when they came back, they told me that I had persistent lymphadenopathy and that it was an incurable disease. There was nothing that they could give me, but there would be prophylactic care when the time came. I was 33 and my life was over.” 

Jonathan Blake came back from the brink of suicide after receiving a terminal diagnosis

Of course, Jonathan actually had HIV – but it would be a couple more years before that virus would be formally identified and named. Still, hearing the word “incurable” sent a chill through him.

“I was just winded,” Jonathan says. “I remember that I left there and went back to my flat in the East End and I just closed the door and sunk into this desperate depression, and I really didn’t know what to do. I remember that I used to go off to pubs and bars because I wanted to be around people, but I didn’t want to make contact with people, so I would stand in the shadows and would be kind of sending out vibes – ‘don’t come near me’ – and it obviously worked because people didn’t.”

In December of that year, Jonathan had started hearing about what was happening to gay men in the United States as HIV spread out of control. As stories circulated about the mystery virus that was doing the rounds, Jonathan decided it would be better to take his own life rather than stay alive with his terminal condition.

I know that I’m one of the lucky ones, and I don’t know why.

“Of course, I heard the voice of my mother saying, ‘You clean up your own mess – you don’t leave it for others to clean up.’ I thought, ‘I am going to leave one hell of a mess – I can’t do it. I just can’t do it.’ So then it’s a situation of, what are you going to do? If I couldn’t kill myself, then I had to get on and live. But how on earth do you do that when you’ve got this killer virus coursing through your veins – you’re like a modern day leper – and I really didn’t know what I was going to do.” 

All these years later, Jonathan is miraculously still alive. He has no idea how or why he lived when so many others died. He was one of the first people diagnosed with HIV in the UK, but he lived long enough to see the dawn of effective treatment in the late 1990s. 

“It’s amazing – I really don’t understand. I know that I’m one of the lucky ones, and I don’t know why. What always intrigues me is that nobody seems to be that interested in why, and I think that fundamentally they should be looking at what our genetic code is – what is it that I have got that has kept me going where other people have succumbed to it?”

Sadly, the stigma still hasn’t gone away. Jonathan and countless other people who are living with HIV often face relentlessly cruel attitudes from people who have little to no understanding of the virus. He thinks it all comes down to Britain’s conservative values and its deeply-embedded fear of talking about sex. 

“The attitude was always that this was something that was sexually transmitted, and the English are appalling at dealing with sex,” Jonathan says. “So the moment that any connotation of sex comes in, it muddies the waters and people just lose it. They completely lose it. And I think that was one of the problems – it was seen as being this gay disease. Viruses don’t go, ‘Oh, you’re heterosexual – I won’t touch you.’ Of course they don’t – they want a nice, warm host, and anybody will do. 

“That’s the truth – and that’s why stigma has persisted.” 

To learn more about HIV and AIDS research, testing and treatment, visit amFAR or the Terrence Higgins Trust.

Suicide is preventable. Readers who are affected by the issues raised in this story are encouraged to contact Samaritans on 116 123 (www.samaritans.org), or Mind on 0300 123 3393 (www.mind.org.uk). ​Readers in the US are encouraged to contact the National Suicide Prevention Line on 1-800-273-8255.

• Nov 29 2023

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