‘I don’t know how I survived’: Jonathan Blake at home in London. Photograph: Antonio Olmos for the Observer
Since HIV was first diagnosed in Britain 30 years ago, the reality of having the virus has changed dramatically. From a survivor of the 1980s epidemic to a recently diagnosed mother in her 60s, Eleanor Tucker hears six life-affirming stories
Story via The Observer (@obsmagazine)
Jonathan Blake, 65
Lives in London with his partner. He was one of the first people to be diagnosed with HIV in this country
The only thing that stopped me committing suicide was that I couldn’t bear the thought of someone clearing up my mess. It was 1982, and I’d been to my GP with the kind of swollen glands that hurt when you shook hands with someone. Tests showed I had HTLV3, the original name for HIV. At the time there was all this news filtering in from the US about a mystery illness – that it was terrifying, and terminal. If I can’t kill myself, I thought, I’d better just get on with it.
They wanted to put me on AZT, later revealed to be a failed chemotherapy drug. I refused – I didn’t trust the drug companies; still don’t. But saying no might have saved me. I saw so many people die – of the virus, but also from the drugs. In the back of my mind was always: “It doesn’t matter, I’m going to die soon anyway.” So I got out there and lived my life.
Not long after my diagnosis I met my partner, Nigel, then got involved with LGSM: Lesbians and Gays Support the Miners. I thought we’d take the story of what we did, raising money for the mining families of a town in Wales, to the grave. But a film about it, Pride, came out last year. I like the way my character [played by Dominic West] is portrayed: he’s neither a victim or tragic – HIV is just part of who he is.
I managed with no medication until 1996 and then tried different combinations until I found the one I’m on now. My health is not perfect, but I’m here 30 years later. I don’t know how I survived. The funny thing is, this life I’ve had with HIV, I wouldn’t have missed it for the world. It’s taken me on some amazing adventures.
Lizzie Jordan, 33
Was diagnosed in 2006. She lives with her 10-year-old daughter
I had been with my partner Benji for four years and our daughter Jaye was just 13 months old. One day Benji came home feeling unwell. We thought it was just a sinus infection, but within four days he was dead.
Postmortem examinations showed that he had something compromising his immune system. That something was HIV. I was tested soon afterwards – as was Jaye, who I was still breastfeeding. Her result was negative. Mine was positive. At that point I was in shock. My only reference point was Mark Fowler in EastEnders. But I’m a mother and I had Jaye to think of, so I just had to keep going.
Although my first thought was to keep my diagnosis a secret, I realised there were women Benji had slept with before me who needed to know. So I decided to be as open as I could. It was hard, though, and his family refused to believe that he’d had Aids. Some of them even blamed me.
That was eight years ago. Today I am happy, healthy and symptomless. I started taking medication last year, and it’s just one pill a day.
Jaye is 10 now and I have told her age-appropriate things. To start with, it was as simple as “Mummy has bugs in her blood.” Now she understands a lot more.
I have never come up against negativity, which I think is partly because I’m open about my situation. I’ve dated other HIV-positive people, but recently I met someone on Twitter who isn’t. It says on my profile that I write for beyondpositivemagazine, but I had to check he knew what that meant. He did. It’s a relief when it doesn’t matter to people, but there’s still a lot of work to be done.
Steve Craftman, 58
Lives in Dyfed, Wales. He was diagnosed in 1987
There are three epidemics, in my view: the newly diagnosed, who are going to lead pretty normal lives; those who recovered from the early days – the 80s and 90s; and then there are the people like me, who survived but with a lot of health problems.
Back then they gave us five years at the most. I made it through, but I’ve got many health problems, mainly due to the medication I took. I have osteopenia [the stage before osteoporosis] in my ankles and hips, which means I feel unsafe riding a motorbike now. The damage to my body is nobody’s fault – the doctors didn’t know what they were dealing with, and the drugs were so strong. You could say I fell out of the side-effect tree and hit every branch on the way down.
I’ve done a lot of grieving, lost a lot of friends and lovers. It’s not easy and it’s often lonely. In America they’ve come up with a name for it: Aids survivor syndrome – a bit like PTSD. I’m still here, though, nearly 30 years on. Am I tough? Not really. I think I’ve just been lucky.
I’ve had my fair share of prejudice over the years. I was living in Bristol 10 years ago with my partner, John. We had abuse and threats shouted at us, and our car was vandalised. The police advised us not to pursue it – they said we’d be better off moving on. We set up home in a tiny village in Wales, where we were more accepted than in the city. John died there, from Aids, in 2007.
I’m open about my situation. At a hospital appointment recently, the doctor asked if I was “out” about the fact that I have Aids. I turned round and showed her the “biohazard” symbol I had tattooed on the back of my neck last year. “I’m guessing that’s a ‘yes’ then,” she said.
Matthew Hodson, 47
Lives in London with his husband. He was diagnosed in 1998
I was tested in 1998 after they announced at the International Aids Conference in Vancouver that combination therapy was effective. I suppose I needed to know that there was some treatment that would work first before I wanted to know. Back then, you were told that HIV might take five or 10 years off your life. Now, your life expectancy is the same: they call it “life altering”, not “life limiting”.
I didn’t take it very well and for a while I stopped having sex and felt dirty, diseased. But people go in different directions, and after I’d thought all the worst-case scenario stuff, about not making it to 50, I took control.
Starting new relationships was hard. There are more interesting things about me than the presence of a virus, but I can see that someone would want to know. Thankfully I’m married now, so I don’t need to worry about disclosure. If I wasn’t, I think I’d tell people straightaway. I have a job, I’m secure and I’m comfortably off – if I can’t be upfront about it, who can? In a way, it’s my responsibility.
As part of my job with I’m chief executive of the gay men’s health charity GMFA, so I often speak to recently diagnosed young men. They picture themselves wasting away like Tom Hanks in Philadelphia. We need to remember these images are part of history now – but there’s still a lot of bad information around. It’s because HIV is largely sexually transmitted and it’s often gay men who have it. There are still the remnants of deeply homophobic attitudes in this country. They’re not the prevailing voices any more, but it’s hard to drown them out completely.
It’s frightening to look back. If you were a young gay man in the mid-80s, you would have experienced a loss comparable to someone who survived the First World War. I knew 30 people who died during that period, but many men knew many more.
Jo Josh, 66
Lives in Reigate. Diagnosed in 2008. She has a 25-year-old daughter
HIV infection conjures up an image in people’s minds. Most infection is via unprotected sex and for a lot of people that means there’s something nasty about it. I hate the word “disclosure”. I don’t feel I have to “disclose” if I don’t want to. I didn’t tell my daughter until I’d come to terms with it myself. She was 18 at the time, and I was in shock. It takes a couple of years. To start with you don’t know much about HIV, how much better the medication is these days. Then you start to realise it’s going to be OK.
I “came out” by going on BBC News for Body & Soul, an HIV charity I’m involved with. Afterwards the phone wouldn’t stop ringing. My friends were supportive, but very emotional. A lot of them used the “death voice”, telling me how brave I was. “No, really, I’m fine,” I’d say. There were a few silences though.
I’m just wrong for HIV: female, 60s, middle class. Some people can’t deal with it. I don’t yet need any medication and I feel like a fraud sometimes. I’ve become a kind of pin-up for ageing with HIV. I don’t talk about how I was infected, though. It starts to become a bit of a soap opera, and I’m more interested in being open about life with HIV than how I got it. That’s the only way we’re going to change perceptions.
Becky Mitchell, 40
Diagnosed in 2012. She lives in Bristol
I can’t say I was delighted when I was diagnosed, but I wasn’t totally freaked out. As part of my job with the Environment Agency I saw a lot of our former chairman, Lord Chris Smith, a high-profile HIV-positive man. He always seemed so active. I thought: maybe it’s not so bad these days.
I’d had a test when I found out my partner was HIV positive. He’d chosen not to tell me, so that was the end of our relationship. I wasn’t showing any symptoms, and I’d actually only been infected about two or three months before. With my CD4 count [the white blood cells that fight infection] still at a safe level, I wouldn’t normally take medication at this stage, but I volunteered for a clinical trial where they wanted people with good counts and low levels of the virus. So I’m taking one pill a day.
Because of the medication, and the fact that I look after myself, my health is really good. I’m more careful, too: I used to push myself too hard when I was exercising – now I allow myself recovery time. Being open about my HIV is really important to me. There’s no shame. I’m a normal woman – I didn’t do anything risky; I just crossed paths with someone selfish. That could happen to anyone, and I want people to realise that. The only stigma I’ve ever come up against was actually within the NHS. I’d had a cycling accident and a young doctor asked me, in front of my mother, if I was an intravenous drug user. I was stunned, but it’s just ignorance, a lack of education.
I don’t feel any different physically, but HIV has been a wake-up call. I feel a sense of urgency: life is for living and I don’t want to waste time sweating the small stuff.
LASS 