Theo Merz 17 NOVEMBER 2015 • 10:32AM
CRISTIAN SANDULESCU, CENTRE: "BEING ON THE RIGHT MEDICATION, MY CHANCES OF TRANSMITTING THE VIRUS ARE NEGLIGIBLE"Charlie Sheen is expected to make a "revealing personal" announcement today, following reports in the US that he is HIV positive. If correct, the anticipated disclosure will confirm that the actor is one of 35 million people worldwide who live with the virus.
Charlie Sheen pictured in 2013 CREDIT: APHIV is rarely out of the news, and yet, because of continuing developments in treatment, few of us understand what life with the condition is like now.
In the UK, the number of young men being diagnosed with HIV has doubled in the space of a decade, while the number of new diagnoses among gay and bisexual men has reached a record high, according to data released by the Government last year. At roughly the same time, a report showed that failings in the education systemmeant a “significant proportion” of school leavers did not understand how HIV was transmitted or how to protect themselves from it.
Here, three young men, all diagnosed in their 20s, talk about living with the virus.
Cristian Sandulescu, 28
'HIV isn’t a death sentence. It’s a punctuation mark in the long sentence that is life'
'HIV isn’t a death sentence. It’s a punctuation mark in the long sentence that is life'
Cristian Sandulescu
“I was diagnosed when I was 25, almost exactly three years ago. I was studying philosophy of science at UCL and became very poorly, which I now understand was a seroconversion episode [when HIV antibodies develop].
“For weeks on end I would be bed-bound: my body temperature was out of control, I couldn’t hold anything in. I kept going to specialists but they couldn’t work out what was wrong, which was very scary.
“When I did eventually get the diagnosis, it was really disturbing to hear I was positive. I knew nothing about what it’s like to live with HIV. I thought I would probably die before everyone else, I would never be able to have children, I would develop some ghastly diseases – none of which, of course, is true.
“I was diagnosed when I was 25, almost exactly three years ago. I was studying philosophy of science at UCL and became very poorly, which I now understand was a seroconversion episode [when HIV antibodies develop].
“For weeks on end I would be bed-bound: my body temperature was out of control, I couldn’t hold anything in. I kept going to specialists but they couldn’t work out what was wrong, which was very scary.
“When I did eventually get the diagnosis, it was really disturbing to hear I was positive. I knew nothing about what it’s like to live with HIV. I thought I would probably die before everyone else, I would never be able to have children, I would develop some ghastly diseases – none of which, of course, is true.
"My life expectancy is no less than anyone else’s. In fact, there is some data to suggest that people who are diagnosed with the virus in the West can live longer because we are being monitored more closely" - Cristian Sandulescu
“I think what surprises people most when I talk to them about it now is that, being on the right medication, my chances of transmitting the virus are negligible. Studies are coming out which show that, in couples where one partner is HIV positive and on medication which gives them an ‘undetectable viral load’, there are no transmissions whatsoever to an HIV negative partner.
“Since I’ve been diagnosed, I’ve had two relationships with HIV negative people, who were both very supportive.
“My life expectancy is no less than anyone else’s. In fact, there is some data to suggest that people who are diagnosed with the virus in the West can live longer because we are being monitored more closely. We see doctors a few times a year, so they have the chance to pick up conditions which have nothing to do with HIV earlier in us than they would the general population.
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“I wish this was reported a bit more, rather than stories like ‘HIV monster goes around and infects hundreds of people’, which breed fear and always turn out to be untrue anyway. There’s still so much to be done on the ignorance and stigma side.
“Since I’ve been diagnosed, I’ve had two relationships with HIV negative people, who were both very supportive.
“My life expectancy is no less than anyone else’s. In fact, there is some data to suggest that people who are diagnosed with the virus in the West can live longer because we are being monitored more closely. We see doctors a few times a year, so they have the chance to pick up conditions which have nothing to do with HIV earlier in us than they would the general population.
HIV: 'the WHO is perpetuating gay stereotypes'
“I wish this was reported a bit more, rather than stories like ‘HIV monster goes around and infects hundreds of people’, which breed fear and always turn out to be untrue anyway. There’s still so much to be done on the ignorance and stigma side.
The HIV virus in the bloodstream CREDIT: ALAMY“The last thing many people will have heard about this was the campaign in 1989 [which featured tombstones and the slogan, ‘Don’t Die of Ignorance’]. So it’s no wonder they don’t know about the changes that are happening every year.
“It’s like Lord Fowler, who came up with that campaign, said: you wouldn’t expect Coca-Cola to do one advertising campaign every few decades, then just imagine people will know what their product is and carry on wanting to buy it.
“I do know how I contracted the virus but I don’t want to focus on that. If I said, ‘Oh, I got it through unprotected sex,’ you’d have a very different opinion from me from if I said I had it through a blood transfusion, or if I’d been born with it. We need to move on from the idea of good AIDS/bad AIDS. We have to make sure we’re not divided more than we already are.
“How you live with the virus is much more important. I felt a lot of anger about how I contracted it but I let it go. You get older faster if you’re a hater.
“I was diagnosed just before my first year exams. I decided to leave my studies and now I work full-time as an HIV peer-mentor and patient representative.
“A positive diagnosis is not a death sentence, it’s a punctuation mark in the long sentence that it life. It makes you reassess your decisions; it’s a reminder of your own mortality. We’re all vulnerable; we all suffer; unfortunately we’re all going to die.”
Tom Knights, 28
'For a year and a half, the only places I went were ASDA and the hospital'
Tom Knights
“I’m not a promiscuous person; I hadn’t had sex for a year when I got it. Three years ago, I was working for a company that runs clubs in London, and a guy I had a crush on used to pop into one club every now and again. It was someone I really liked, or at least thought I did, and one day we got together.
“I’d always done a lot of work for the gay community. I had volunteered for [HIV charity] the Terrence Higgins Trust and I had been the LGBT officer at my college in Sussex. I’d read the literature and I would have said I had an OK knowledge of HIV. But really I was the biggest hypocrite going. I was always giving out advice so somehow, unconsciously, I didn’t think it applied to me.
“When I got the diagnosis I was just numb. I thought it was the worst thing that could possibly have happened to me. There was so much stigma around HIV that I just ignored it. I can’t even say I was upset for that first year because I really just didn’t acknowledge it.
“I’m not a promiscuous person; I hadn’t had sex for a year when I got it. Three years ago, I was working for a company that runs clubs in London, and a guy I had a crush on used to pop into one club every now and again. It was someone I really liked, or at least thought I did, and one day we got together.
“I’d always done a lot of work for the gay community. I had volunteered for [HIV charity] the Terrence Higgins Trust and I had been the LGBT officer at my college in Sussex. I’d read the literature and I would have said I had an OK knowledge of HIV. But really I was the biggest hypocrite going. I was always giving out advice so somehow, unconsciously, I didn’t think it applied to me.
“When I got the diagnosis I was just numb. I thought it was the worst thing that could possibly have happened to me. There was so much stigma around HIV that I just ignored it. I can’t even say I was upset for that first year because I really just didn’t acknowledge it.
"Once I started treatment, I went from being a very outgoing person to being a hermit. The only places I went for a year and half were ASDA and the hospital" - Tom Knights
“I was going out five nights a week, not living the greatest lifestyle, and eventually my health started to deteriorate. Then I had to go back to the doctors and that’s where it really sunk in. There’s a part of me that was surprised the clinic never got in contact in that first year, but I know it was my responsibility to go.
“Once I started treatment, I went from being a very outgoing person to being a hermit. The only places I went for a year and half were ASDA and the hospital. I trusted the wrong people at work and it got around. I left and ended up on job seeker’s allowance.
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“When you have any type of chronic health condition you want to be eating high-quality food but I just couldn’t afford it. I was doing hardly any exercise and I was seriously depressed. That was the worst thing, really.
“When I started on medication, my ‘viral load’ was through the roof. To this day, I haven’t stayed undetectable [meaning there is a negligible chance of transmitting the virus] for more than six weeks. I’ve had to change my meds three times because they haven’t been working and the side-effects have been awful.
Matthew McConaughey plays HIV positive drug runner Ron Woodroof in the film Dallas Buyers Club
“Now I take three pills every evening. One of the side effects is night terrors, which are like the most twisted nightmares you’ve ever had, and night sweats. When I get run-down I get water blisters all over my hands and feet. They pop and then they get infected – I get them on the knuckle, which really kills. I always seem to have one sort of infection or another. I’ve had shingles, ear infections, chest infections…
“Relationships have also been difficult. There were people who never spoke to me again – people I thought of as good friends – just because they didn’t want HIV in their lives at all. I haven’t had sex in two years, and I’ve only had two partners at all since my diagnosis.
“One was a guy I’d known for ages and he was the one who wanted to pursue something with me, but when we had sex I could feel he wasn’t fully there. Then it went very weird. We planned to meet for dinner one evening but he never showed up and we haven’t seen each other since.
“I’ve got a job now, working as an events producer and manager. That side of things is good. I’m happy with my career and I’ve got a good salary. I know I will eventually become undetectable and I do want to start dating again.
“Most of the time I have a sense of humour about it. When people ask why I’m single, I’ll put on a voice and say, ‘It’s because I’ve got the AIDS!’ But I still have my moments when I cry and think I’m going to die like Tom Hanks in Philadelphia.
“I won’t, because I’m getting the right treatment and I’m starting to take care of myself properly. I know HIV is manageable now, but it’s not fun.”
Tom Hayes, 29
'The fear and stigma was much worse than the medical reality'
“Now I take three pills every evening. One of the side effects is night terrors, which are like the most twisted nightmares you’ve ever had, and night sweats. When I get run-down I get water blisters all over my hands and feet. They pop and then they get infected – I get them on the knuckle, which really kills. I always seem to have one sort of infection or another. I’ve had shingles, ear infections, chest infections…
“Relationships have also been difficult. There were people who never spoke to me again – people I thought of as good friends – just because they didn’t want HIV in their lives at all. I haven’t had sex in two years, and I’ve only had two partners at all since my diagnosis.
“One was a guy I’d known for ages and he was the one who wanted to pursue something with me, but when we had sex I could feel he wasn’t fully there. Then it went very weird. We planned to meet for dinner one evening but he never showed up and we haven’t seen each other since.
“I’ve got a job now, working as an events producer and manager. That side of things is good. I’m happy with my career and I’ve got a good salary. I know I will eventually become undetectable and I do want to start dating again.
“Most of the time I have a sense of humour about it. When people ask why I’m single, I’ll put on a voice and say, ‘It’s because I’ve got the AIDS!’ But I still have my moments when I cry and think I’m going to die like Tom Hanks in Philadelphia.
“I won’t, because I’m getting the right treatment and I’m starting to take care of myself properly. I know HIV is manageable now, but it’s not fun.”
Tom Hayes, 29
'The fear and stigma was much worse than the medical reality'
Tom Hayes
“It was 2011 and I was on holiday in Gran Canaria when I kept getting these missed calls from the UK. I’d been for a sexual health check-up before I went but I didn’t think it was related.
“Eventually I picked up and it was a woman from the clinic. She asked if I could come in that afternoon, but I told her I couldn’t because I was away. She said, ‘S---, when are you back?’ I told her I was away for another week and a half. She said, ‘F---. Don’t have sex with anybody and call us as soon as you’re back in the UK.’
“I’m guessing she was new or didn’t have her script to hand.
“As it turned out, the fear and stigma were much worse than the medical reality.
“It was 2011 and I was on holiday in Gran Canaria when I kept getting these missed calls from the UK. I’d been for a sexual health check-up before I went but I didn’t think it was related.
“Eventually I picked up and it was a woman from the clinic. She asked if I could come in that afternoon, but I told her I couldn’t because I was away. She said, ‘S---, when are you back?’ I told her I was away for another week and a half. She said, ‘F---. Don’t have sex with anybody and call us as soon as you’re back in the UK.’
“I’m guessing she was new or didn’t have her script to hand.
“As it turned out, the fear and stigma were much worse than the medical reality.
"Ninety per cent of the problems I have had over the years have come from other people’s attitudes rather than the medical side" - Tom Hayes“I don’t remember much of the appointment when I did get back. You know when you watch a film and there’s some bad news or a bomb goes off, and everything goes into blurry nonsense? That’s kind of how it was for me. The first thing I remember properly was about half an hour after I left the clinic, in a park down the road with all these awful leaflets, waiting for a friend to pick me up.
“I’d grown up in the Midlands and went to Church of England schools where sex education wasn’t really a thing. We saw pictures of sperm and an egg and a video of a woman giving birth. Then I went straight into a long-term relationship with a guy, from when I was 16 to about 23, so in my twenties I found myself out on the gay scene with basically no education and no experience.
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“For the first few months after diagnosis, I refused to go to the doctors, because if I went it was real. But then a friend pushed me into it and I started doing all the research I could.
“I learnt about a trial programme where the NHS were putting people on medication as early as possible, before their immune system dropped below a certain level. I asked several doctors if I could do that. Eventually one of them said I could.
“It was very much what I wanted to do and I knew I had the right – luckily that’s a lot more common now.
“Most people with HIV can just take one pill a day and leave it on the back burner, but I talk about it more because I’m an activist and I run a website called Beyond Positive. I take my pill with my evening meal and that’s it – no side-effects – and I see doctors every four months so they can monitor my immune system and my viral load.
A red ribbon marking World Aids Day CREDIT: REUTERS
“Ninety per cent of the problems I have had over the years have come from other people’s attitudes rather than the medical side. Finding a dentist has been difficult, even though I’m undetectable and they’re legally obliged to provide a service. One of them asked if I could come to the last appointment of the day.
“There are still places where travel is a problem – like Russia and the Middle East – and other countries where I could visit but not stay, like Canada, New Zealand and Australia.
“Sometimes people contact me over gay dating apps, asking why I’m there if I’m HIV positive, because I couldn’t possibly have sex or a relationship. I tell them it’s not 1984 any more and send them some links if they want to do some reading. It’s almost exclusively younger guys, because there’s a complete lack of education.
“Actually, I’ve had an HIV negative boyfriend for the last two years, and we don’t use condoms, with the blessing of my doctor.
“We still talk about HIV in such a basic way: it can kill you, wear a condom. But we don’t talk about the new revolutions: that people who are on treatment are no longer infectious, or that an HIV positive father can have sex with an HIV negative woman, who will remain negative and have an HIV negative baby.”
“Ninety per cent of the problems I have had over the years have come from other people’s attitudes rather than the medical side. Finding a dentist has been difficult, even though I’m undetectable and they’re legally obliged to provide a service. One of them asked if I could come to the last appointment of the day.
“There are still places where travel is a problem – like Russia and the Middle East – and other countries where I could visit but not stay, like Canada, New Zealand and Australia.
“Sometimes people contact me over gay dating apps, asking why I’m there if I’m HIV positive, because I couldn’t possibly have sex or a relationship. I tell them it’s not 1984 any more and send them some links if they want to do some reading. It’s almost exclusively younger guys, because there’s a complete lack of education.
“Actually, I’ve had an HIV negative boyfriend for the last two years, and we don’t use condoms, with the blessing of my doctor.
“We still talk about HIV in such a basic way: it can kill you, wear a condom. But we don’t talk about the new revolutions: that people who are on treatment are no longer infectious, or that an HIV positive father can have sex with an HIV negative woman, who will remain negative and have an HIV negative baby.”
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