The number of people living with HIV in the UK is at an all-time high: the figure reached an estimated 86,500 people in 2009, according to the Terrence Higgins Trust. The Health Protection Agency’s data show that new diagnoses of HIV run at around 7,000 per year (it peaked at 7,837 in 2005, and had been reducing year on year until 2010).
No matter how much you may know about HIV, getting tested can be a nerve-wracking process. Blogger and journalist Jack Cullen, 23, had a recent scare when a first test came back as ambiguous. Although he tests regularly he’d had a split condom during sex with a man who was HIV positive.
Jack explains what happened: ‘After that night I knew could have done PEP; but I didn’t agree with the idea of making my body seriously ill, and it was a really important time for me at work. If I’d known I’d definitely gotten HIV off Leo then I would have done PEP, but the truth was I was top, it was a brief split of a condom, and his medication has successfully lowered his HIV count down to “undetectable”.
‘I was on the Tube checking my text messages when one came through from the clinic: “Your results were equivocal. Return to 56 Dean St for a second test”. I felt my face lose its colour, I felt like a fool for not doing PEP, and I suddenly felt contaminated and dirty. I didn’t know who to phone because I’d read online that with HIV it’s important to control who knows. That Friday I met a really cute boy in a club and we kissed; he wanted to come back to my house but I couldn’t. I couldn’t f*** him in the knowledge that I might be carrying HIV, but I couldn’t tell him either.’
The test eventually came back negative – but Jack saw it as an important wake-up call. ‘Someone as lightheaded and carefree as me needed that wave of fear as a learning curve’.
One in Ten
Around 10 per cent of new diagnoses each year are of people aged between 16 and 24. Stephen, a 23-year-old in east London, never thought that he would be one of them. ‘It was completely unexpected,’ he explains. ‘I’d just come back from Thailand where I’d been traveling for about four months. And I came back and I just wanted to have everything checked.
‘Over there, you kind of felt like you were the only one that was young. It seemed like it would never happen to people your age, which is a really naïve way to think about it. But actually, it was quite hard for me to think that there were other people my age that were going through it.’
Andy was just 17 when he went for his test – the same week he’d started a new job working in sexual health. ‘They retested me about four times because they were really unsure, because they were convinced that I was too young.’ He explains that he had been sexually active from age 12, and had known about HIV since he was 14. ‘It wasn’t unknown to me. I knew there was a possibility’.
From this very young age Andy had taken a lot of risks. ‘I’d go out, I’d party, I’d drink. I don’t do any drugs anymore, but I did when I was younger. I would put myself in situations that weren’t – now I look back ‑ at all safe or at all sensible. And I would absolutely die if I had it happen to my young people. So I knew I’d put myself in situations. Many times I wouldn’t know who was lying next to me or where I was, what part of London I was in, because I would just go out and get absolutely trashed.’
He had started getting tested on a routine basis from age 14 so on this particular occasion he wasn’t concerned about whether it would come back positive or negative. ‘I’d had Chlamydia before, a couple of times. And I just felt that anything that came my way, I’d deal with it. That’s who I am; I just deal with it as it happens. When they called me in saying, “You’ve come back as positive for Chlamydia,” I made a joke of it: “Oh, again?” So I went in and they were like, “Yeah, you haven’t got Chlamydia. You’ve got something else.” I was like, “OK, what is it?” They told me and I just sat there and said, “What next?”’
Jason, from Brighton, was 19 when he got his diagnosis, ‘When I really found out, it was the only time they’d offered me tea, because it had taken so long. I’d been there for a good hour and a bit, and they were taking a long time to see me. And I remember thinking that my frequent flyer miles had paid off, and they’d finally started making me tea.’ He says he has little recollection of exactly what happened next, describing it all as a bit of a blur. ‘After I was told, I’d asked to have some time alone, because I decided I needed to call all the people I’d had sex with. So I was calling these people, and it was absolutely awful’.
Discrimination in the workplace
Developments in treatment of HIV mean most people living with HIV continue to work. The Disability Discrimination Acts provide protection for people with HIV, but that doesn’t always make telling colleagues very easy. At the small sexual health charity he worked for, Andy had a good relationship with his boss. ‘I went after work that day, on the Friday when I was first given the first result,’ he recalls. ‘I got to work, went to see my boss. Everyone knew something was wrong. I had makeup running down my face. I’d been crying on the train or something like that. I don’t even remember. She knew me really well, so we talked about my situation and all these things. It was the first time I was open with someone. It just went from there. She supported me for the space of six months to a year, making sure I was going to appointments.’
But when he left the organization to work in sexual health for the NHS in a London Borough the reaction was quite different. ‘For the sexual health department, they had a lot of problems with my status,’ he explains. ‘They didn’t like the fact that I was open about it. I’m not open about it with clients, generally. But I was open; especially in the sexual health department, you expect it to be OK. But it wasn’t. There was discrimination there.
‘Well, if I can’t be open about it here, how am I supposed to support clients about being open to their friends, family and colleagues? This was just my first week, four days in, I was already being told, “No. Don’t be yourself. Don’t do this. Don’t be open.” I’m not going to change the way I am because I’m earning a wage.’
For Stephen, throwing himself in to work was a way of dealing with the diagnosis. ‘I went out and got a job very quickly at first, and I didn’t tell them about it. In the end, I actually ended up working in a department where my manager was quite openly HIV positive. Even knowing that, I still didn’t share it with my work. I’d go to my hospital appointments on my days off. I didn’t really want to tell them. I didn’t think that there was any need for me to tell them.’
Coming out all over again
Telling family is different, and for a gay man it can be as just as hard as coming out as gay or bisexual. Although his mother and grandmother were supportive, Stephen found the conversation with his brother really difficult. ‘I think the reason I told my twin brother was because I felt it was a huge part of my life, but I felt really guilty about not sharing with him. And it’s the same kind of feeling guilty when I came out to him. For him, it was the same feeling of anger. But you’re hiding a big part of your life, and I didn’t want to do that. So that’s why I chose to tell my family and my friends, really, because I didn’t want to go back to that stage when I was 14 and hiding things.’
Not everybody is comfortable telling their family. Jason never has. ‘I couldn’t really work it into any conversation that I would have with my parents. “Pass the salt; by the way…” I’m perfectly comfortable with not telling them now. It just seems to me it would overly worry them more than it needs to.’ Although he recognizes the similarity to coming out, he points out some important differences: ‘It’s like not something that you do once and kind of everyone accepts, it’s something that you do again and again and again. When you find new partners, it can be really difficult sometimes’.
Andy is in a long-term relationship and his partner is negative. ‘When you’re in a relationship, you decide that you’re not going to use protection anymore, you’ll both get tested, get your all clear and stop using them,’ he says. ‘We didn’t have that. We couldn’t ever do that.’
His partner is tested and monitored regularly, but Andy is always in fear of bad news. ‘It is really stressful around that time, waiting for his results; because I think if he caught it, it would just destroy both of us.’
It took Stephen six months after finding out before he felt able to think about dating again. He says that his approach to dating now is different, and that it isn’t necessarily a bad thing. ‘I don’t sleep with people unless I tell them, and I won’t tell them when I first meet them. The way I was before, if I was drunk I would have happily gone home with someone. And I don’t do any of that anymore, so that’s completely changed. I wouldn’t say, necessarily, it’s changed for the worse; I’ve just had to be a lot more sensible and realistic about how I behave. It takes me a lot longer to build a relationship with people.’
Just taking a pill?
Jason and Stephen haven’t needed to take medication yet, and for Jason the fact this is still the case five years after diagnosis is definitely a relief. For Andy, starting medication was the most difficult part of being HIV positive. ‘Compared to medication, diagnosis is nothing,’ he says. ‘I knew it was going to happen. But what it did to me, I actually was signed off work for a month and a half. I was unsafe to be on my own. I was hallucinating. I couldn’t sleep. I couldn’t eat. I found it very hard to drink water, even. And I was this crazy person.’
Andy has a strong message for those who think that treating HIV is just about taking some pills. ‘You can just take a pill, but it restricts you from doing a lot of things in life. It restricts you from certain work, certain careers you might want. It restricts you from going to certain countries. It does change your life. It’s a silly little thing to think about that you can’t just stay the night with somebody. If you haven’t got that supply on you, you can’t just stay over at a friend’s house. You’ve got to go home and take one within a certain window period. If you don’t take them, your virus can start to build up a resistance to them.’
All three of our interviewees agree that the most important thing is to be tested regularly and know your status. For Jason it means that he can be in control. ‘I’m so glad I know now that I have it. The idea that I might have passed it on and not known about it is truly awful to me. So the fact that I now know gives me a further peace of mind that I can control my fate; I can prevent it going on now that I know about it.’ And Stephen cautions not to expect any warning: ‘I had no reason to go [to the clinic]. I’d never had an STI. It’s not like you have to have all the other ones before you get this one. HIV is my first ever sexually transmitted disease.’
Jack Cullen considered what he’d have done if the second test result had been different that day: ‘If that morning was different and I did find out I was positive then I wouldn’t beat myself up about it. I’d be determined to carry on living happily and healthily, because HIV isn’t a death sentence. I wish there wasn’t such a stigma or social taboo too; people like my friend Leo, who are living with HIV, deserve our support and respect, anyway – he’s one of the fittest and funniest guys I know.’
If you have been affected by any of the issues in this article, we can provide support. We offer a completely free and confidential rapid HIV test and you’ll get the results within 60 seconds from a simple finger prick test. We use the Insti HIV test produced by BioLytical laboratories. The test is 99.96% accurate from 90 days post contact for detecting HIV 1 and 2 antibodies. Appointments are not always necessary, if you would like a test, please contact us on 0116 2559995
Other support organisations exist including the Terrence Higgins Trust, they can be contacted on 0808 802 1221, and GMFA. The NHS Choices website also contains useful information on sexual health clinics and getting tested.
Some names in this article have been changed at interviewees’ request.