Jonathan Grimshaw was one of the first men to be infected by HIV in Britain. Here, he talks about survival and the illness that has become his life’s work
Jonathan Grimshaw at home in East Sussex. Photograph: Sonja Horsman for the Observer
By the beginning of 1987, Jonathan Grimshaw had established himself as the UK’s most visible HIV-positive man. He looked striking: he was 32, bald and he often wore a bow-tie. He spoke eloquently about a terrible disease, something he’d been diagnosed with soon after the tests became available in February 1984. With no specific treatments, his prognosis was not good, but he believed his best chances of survival lay within the realms of activism, honesty and education. So he wasn’t at all surprised one day to be seated on a sofa for an explicit live television programme with Claire Rayner.
It was National Aids Week, the first of its kind, and all the channels had given up airtime to support the government’s unprecedented public health campaign. Everywhere one looked, there was a nervous health minister explaining that we were all at risk and how best to protect ourselves. In the ad breaks, there were images of icebergs and tombstones and the voice of John Hurt imploring us not to die of ignorance. And as the country sat down to dinner, it was greeted with the sight of an agony aunt with a condom in one hand and something else in the other.
“She had been sent a very peculiarly shaped wooden phallus by a fan,” Grimshaw recalls, “and she was trying to get this condom on to this very fat phallus. First take, she couldn’t get it on. KY all over the place. She had this blouse which she was getting black marks on because of the KY. Second take, she couldn’t get it on. Third take, she finally forced the condom down on this wooden monstrosity.”
Claire Rayner, alas, is no longer with us. And nor are almost all of Jonathan Grimshaw’s friends from that time. But at the age of 56, Grimshaw is still in fairly good health, one of this country’s longest-surviving, HIV-positive men. After a period of retirement, he is once again engaged with HIV work and, as we approach the 30th anniversary of the first Aids case in the UK, he finds himself reflecting with a mixture of sadness and wonderment.
“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 phonecalls 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.” Grimshaw laughs, as he often does, as a release. He adds: “That’s all I can say about it really.”
But of course there is more. Grimshaw lives with his long-term partner in an elegant, 18th-century, beamed house in Tunbridge Wells. He says that he first became fully aware of HIV the same way many of us did – by watching a 1983 BBC Horizon programme about the epidemic in New York. He had lived in New York a few years before and not long after his return to London he began to see stories about a mystery illness in the newspaper Capital Gay. “But I didn’t know anyone personally affected by it. It seemed to be in America, remote, and it didn’t seem like anything that was going to affect me very much.”
It became more personal in 1983. “An ex-partner of mine called me up and told me that somebody who we’d both slept with at some time in the past had got this new disease. And the doctor who was treating him had suggested that all of his sexual partners should attend the clinic just to be monitored. At that time, the cause wasn’t known, but it was thought there was a sexual transmission element.”
He attended the St Stephen’s clinic, which became part of the Chelsea and Westminster Hospital. He seemed to be fine, but was asked to come back every three months.
“So I kept going back. Then on one visit later they said they had tested my blood for this new virus which was thought to be the cause of Aids and the test had come back positive. I think I was one of the first people to be tested in the country. You just think, ‘Oh Jesus, I’m going to die. I’ve got this disease, and if I have intimate sex with somebody I can kill them.’ You can’t really take in much more than that. The doctor was saying, ‘Will you be able to cope?’ and I was saying, ‘Of course I’ll be able to cope’, and then I left the clinic reeling.
“I didn’t have a partner at the time. I told my parents and I said I wanted to go home for a few days to see them and talk about things. I was in a pretty bad way emotionally. But they didn’t want me to go home. I had a younger brother who I think at the time was 13 and they just didn’t know if there might be some kind of risk to him from my going home. It was terrible. On one hand, I could understand what they were saying and even sympathise with it. On the other, I was dreadfully upset. It really felt like a rejection. I told a very helpful nurse at the clinic what had happened and he said, ‘Do you want me to talk to them?’
“My parents lived in the north-east, so they came down, and this nurse took them through the risks and how it could be transmitted and not transmitted, and for them being able to hear this with a medical hat on reassured them. So after that I was able to go home.”
Grimshaw learned that the Terrence Higgins Trust was about to set up a support group for people who were infected but evidently healthy. “I made sure I was in it – I really was not coping at all well. Drinking quite a lot and completely not knowing what I was going to do.”
There was no treatment against the virus, and no known prognosis, but there was much prejudice. “Because there wasn’t a scientific explanation,” Grimshaw recalls, “all those very ancient theories about what causes disease came up – the idea that disease is some kind of punishment. Those are very difficult things to dislodge.”
The first support group was only intended to last for six weeks, but Grimshaw recognised a need to extend this and co-founded the organisation Body Positive in 1985. This provided a telephone helpline, counselling and hospital visits and spread out from London to 43 local groups.
It was around this time that Grimshaw became the acceptable public face of HIV. “I suppose I felt at that point that people had to take me as I am. It became obvious to me that the way the stigma was partly going to have to be dealt with was that the public needed to see people – as I thought, fairly normal people – on television talking about it, about how if affected them as a human being. I also felt I had nothing to lose – I was probably going to die. There were a few periods when I was on television a lot and I remember I would be careful not to stand at the edge of the tube platform. There were stories about people with Aids being attacked and things could be quite violent.”
Grimshaw looked after himself as best he could. He joined a gym; he ate well. And then there was his work, the sense of fighting the virus by doing something. “Psychologically, that was hugely important to me. I remember a few people who got very involved in the activism used to say, ‘This is the best thing that has happened to me – I’m doing something with my life now that’s really important and worthwhile, and if HIV hadn’t happened I would never have done anything like this.'” (Before his new mission, Grimshaw worked as a television production manager; his last project before diagnosis was a six-part series for Channel 4 called Survive.)
Grimshaw’s work expanded from Body Positive to include consultative and educational roles at many Aids organisations. He also sat on the first committee responsible for planning the Conservative government’s public health campaigns, advising ministers on the most effective language to persuade gay men to protect themselves. He remembers fearing a backlash “if suddenly the public was being told what gay men did in bed”.
His counselling work culminated in the establishment in 1989 of the Landmark, a day centre in south London. It was opened by Princess Diana; a year later, Grimshaw was awarded an MBE, the first such honour for someone in the HIV sector. Looking back, he flippantly suggests he may have had “a kind of Aids activist compulsion disorder”. Regarding his public visibility he says: “I may have been a bit overexposed. I was told at one point that people were calling helplines asking if HIV made you lose your hair.” In fact, his baldness is due to alopecia (“like Matt Lucas”).
During this period, his blood was monitored every three months. For more than a decade, his T-helper cells, the standard gauge of a responsive immune system, remained high. Grimshaw was fortunate to be a slow progressor.
Fifteen years ago, things slowly changed. His T-cell count began to decline and he found he was continually exhausted. He retired from the Landmark in the mid-90s (the centre now caters for people with learning disabilities), and moved to Brighton, where he bought himself a flat and tried not to be too pessimistic. “If you looked at the downward slope on the graph it wouldn’t be too many years before it hit bottom and I’d be done for. The advice at the time was, ‘Cash in your pension, have a good time with the years that you’ve got left.’ So that’s what I did. I thought that was it.”
But then the drugs took effect. The new treatments, known as protease inhibitors, worked particularly well when taken in a carefully balanced combination, and Grimshaw has had to modify his particular cocktail a few times to combat resistance. Although bouts of breathlessness require him consciously to conserve his energy, he remains largely well. He is a little hard of hearing, but he attributes this to standing too close to nightclub loudspeakers.
Five years ago, he decided to stop the Aids work completely. But last year he came across a study by the Terrence Higgins Trust into the lives of people over 50 with HIV. “There were echoes of how things used to be and it got me very annoyed again. It’s been found that people with HIV are experiencing diseases of ageing, like heart disease or liver disease or kidney disease 10 to 15 years earlier than the general population. A lot of them are quite likely to be poor, because they’ve cashed in their pensions, they haven’t worked for a long time. And there are still problems even in the NHS of people experiencing stigma and discrimination.” Grimshaw volunteered again to work on strategy.
As of June 2010, there have been 26,262 diagnoses of Aids in the UK and there are about 90,000 people living with HIV. I ask Grimshaw how many people from the original Body Positive support group were still around.
“I think they’re all dead. Four definitely are and the fifth I lost touch with. I think I would have heard if he was still alive.”
I wonder whether he ever asks himself: “Why me?”
“Not really. I don’t think my survival is a result of anything I’ve done or not done. I think it’s just a particular make-up of my immune system. I am extraordinarily lucky.”