‘I’m healthy in every sense of the word’: Young men on living life as HIV positive

‘I get more DMs than ever now’

When Jay got out of a long term relationship, he decided for the first time ever, he was going to have casual sex. Jay’s more of a monogamous man and hadn’t really had sex with someone he didn’t have an emotional connection with before, but he wanted to try it. He picked a fittie he followed on Instagram, exchanged a few messages with him, and was shortly on a train from Birmingham, where he lives, to Manchester, where Insta Fittie lived. Jay wasn’t meant to spend the night, but he arrived on Tuesday evening and left midday Wednesday. They just hit it off. The pair agreed to see each other again, and Jay went back to Birmingham, pleased that he’d successfully ticked casual sex off his bucket list.

Then Jay got sick. A week after he met Insta Fittie, he went to A&E and was admitted to hospital for six days. Jay’s doctors thought it could be digestive issues or Crohn’s disease. He had various tests, including an MRI, because it’s rare that someone so young and healthy get sick so suddenly, out of nowhere. Jay went on medication, then came off it, then got sick again. His friends floated the idea of HIV to him, but Jay wasn’t convinced. He got an STI test in late October just to be sure. On the 1st November, while Jay was out Christmas shopping, his clinic called him to tell him he had chlamydia. ‘Of course’, Jay thought, ‘of course he gave me Chlamydia’. Then the nurse on the phone told him he had also tested positive for HIV, and Jay’s world stopped.

Yet, a year and a half on from his diagnosis, Jay has never been happier. His world might have stopped turning briefly, but he was forced to reckon with his HIV status, and now, he’s proud of it.

‘Boys hit me up more than ever before’

“I came out about my HIV status publicly in June,” Jay told The Tab, “simply because the first lockdown really gave me the chance to look inwards and really reflect upon what it meant to me. It allowed me to deal with it in a really new and mature way. And I just became so confident with myself that I was like, ‘Well, why am I not using any platform that I have and any kind of voice that I have to raise awareness about this?'”

Since June, Jay has been vocal about his HIV status on social media and has made multiple TikToks about his story, with the aim of breaking down the stigma and educating people more about what being HIV positive actually means. He didn’t process it perfectly at first, going out and raving, taking drugs and distracting himself, but eventually he was forced to deal with his diagnosis in lockdown. By the time he came out, he was ready to deal with it head-on.

“The fact that I hid it for a few months and dealt with it myself,” he says, “gave me the strength to answer people’s questions when they came. Like when they had questions, I had the knowledge and the resources to be like, ‘Well, actually, this is what a modern diagnosis means, and it might not mean what you think it means.'” This involved a lot of conversations about U=U (undetectable equals untransmittable), which means that those taking medicine for HIV have a form that is so suppressed and protected, it doesn’t show up in tests and therefore can no longer be passed on to others.

Despite this, Jay has and will always disclose his HIV status to a prospective partner, because it’s a part of him now. “Because for me, offering yourself to someone physically, I’ve always associated an emotional intimacy with it. And I don’t know if I’d be able to comfortably sleep with someone, and them not know my status, you know?”

But does it ever put boys off? “No, because of how vocal I am, I’m getting more DMs than ever,” Jay said.

‘It’s the lack of education that’s to blame’

Not everyone has such a gradual, measured response to receiving their diagnosis as Jay. George, a final year student at the University of Birmingham, said it felt his world was crumbling around him when he found out. “Obviously,” he told The Tab, “this was because I didn’t know anything about it. It was a shock to the system. Almost like a fight or flight response. I thought the only way I was gonna get through it was by fighting, almost like surviving. So I just educated myself on it. And forced myself to be aware that this wasn’t going to be the end of me. And yeah, it was rubbish at the time. But it didn’t take me long to come around and realise the reason that it was so bad: We didn’t know anything about it. We don’t get taught anything about it in school.”

George thinks that education is key to breaking down the stigma that still surrounds HIV. “The only education I personally had on HIV/AIDS was the very, very limited touching on it in school, and it was always linked to the AIDS crisis of the 80s. And the only thing you know about the AIDS crisis in the 80s was that a lot of people died. You got HIV, you had this mysterious tumour, and then it killed you.”

“Now, I live a completely normal life. But obviously there’s this misconception with HIV that like, you can’t do things, you have to be careful, you can’t touch people, you can’t share drinks, but it can’t be passed on through any of that. Essentially, it’s like locked in a little vessel inside of me, it can’t get out.”

Luckily, George has never faced overt stigma surrounding his HIV status, but he says that is because he got “very, very lucky” with the people he surrounds himself with. He was once turned away at a tattoo studio, as they tend to ask you your HIV status. As a result, George has made an effort to educate tattoo studios about HIV, and about how someone like him, who has undetectable HIV thanks to medication, can’t even pass it on through a tattoo needle – or any other means, for that matter.

“I worked with a few different charities to have letter distributed to all tattoo parlours in Greater Manchester,” George told The Tab, “which essentially taught them the realities of tattooing someone with HIV. And actually, how it’s probably more dangerous to tattoo someone who doesn’t know their HIV status than someone who does. I am HIV positive, but I have HIV that’s been treated. Then there are people walking around who haven’t been tested, who have no idea if they’re HIV positive or not.”

‘I sat, had a cigarette and a small cry’

One thing everyone with HIV has in common is a perfectly preserved memory of the moment they found out. “It was approximately 9.10am in the morning,” Lewis told me, “on the 4th September 2019. I received a call from my local clinic in south Manchester. I had attended an emergency testing appointment the week earlier due to some worrying symptoms I’d been experiencing, my skin had begun to show marks and I was void of any energy, lethargic most of the time. I was sat on my partner’s sofa and they told me they ‘had detected a trace of HIV from my blood tests’.

“The next hour after that is still mostly a blur to me, I remember I lit a cigarette and had a small cry.” Then, for the first time in his life, Lewis considered suicide. He then remembered his partner, and felt a responsibility for him. He knew he had to wake him up, tell him, and get him tested too.

“I went out that night and got blind drunk, I told a couple of close friends who were there to console me. It is important to bear in mind myself and my partner were only together for a couple of months at this point and the support I had from the outset was vital to my mental recovery. The next week I was in another appointment to talk about treatment options. My partner’s results came back negative and he is HIV negative up until today.”

Lewis then went on medication, and says he is “healthy in every sense of the word”. He struggled at the start, bingeing on drink and drugs, but has since made peace with his diagnosis. His grandparents know, he has a circle of LGBTQ+ friends and he, and they, all took time to educate themselves on what being HIV+ really means today. He still gets hit with the stigma occasionally, like a recent message saying “having AIDS is nothing to be proud of mate”.

“Two years ago that would have either deflated me or angered me to the point I would have probably been silent or wanted to threaten the person,” Lewis said. “Now, my response for that would be: I haven’t got AIDS, I’ve never had AIDS, thanks to modern medicine it’s highly unlikely that I’ll suffer from AIDS. Then I’d insert a link to some resources for them and thank them for their ‘effort’. I’d ask them to learn the most basic facts around the difference between HIV and AIDS before they ever engage somebody living with HIV in a conversation around the subject, sensitivity is key. I hope sincerely I do not have to state that HIV isn’t just a disease that affects gay men. HIV does not discriminate. It’s not a gay disease.” Lewis also warns people not to fall into the common misstep of asking HIV positive people about they contracted it, because as he rightly says, “it’s none of their f***ing business.

“I am still learning too. I’m learning how resilient I am, I’m learning I can help others with words when maybe two years ago I never thought I could. If this helps just one singular person, whether it’s to educate them against using stigma or whether they’re living with HIV themselves, then this has done its job.” Lewis still lives in Manchester with his partner and their little Yorkshire terrier, Baxter.

‘I remember my first thought being “how will this affect transitioning?”‘

Luka is trans, and has been HIV positive since December 2017. He found out in what he calls “ironic circumstances” because he was actually signing up for a PrEP trial (PrEP is a drug taken by high risk groups to prevent catching HIV). At Luka’s appointment, he was given a routine finger-prick test, then returned to his appointment room empty – which he found odd. Luka told The Tab: “A few minutes later and two women enter the room and the doc looks at me and says, ‘Well, we’ve had some news…your point of care test came back as reactive. We’re fast-tracking your bloods through the lab. It could be a false positive so don’t panic just yet’.” But Luka knew enough about this process to know what was coming.

“I don’t remember feeling too panicked at the time but I definitely felt surprised and I remember the first thing I asked the health advisor was, “So, what happens next?” My first thought was ‘how will this affect transition?’ I think I just sort of drifted through the next 24 hours as I waited for the confirmation phone call. I knew I wasn’t going to die in a year but I also knew it would alter my life.”

In a strange parallel with Jay’s story, Luka got his confirmation call when he was out Christmas shopping the next day. “I definitely felt a bit removed from everything once I got off the phone, like an invisible wall had gone up around me or that I was looking at all these shoppers through glass. This little passenger in my bloodstream that separated me from everyone invisibly.”

For a while, Luka felt completely alone. “I didn’t know any other trans men who were positive. When positive trans people get talked about it’s always trans women (which is not a bad thing, don’t get me wrong) so I felt very lonely and isolated in that sense for a while. I suddenly had my feet in three communities and felt a little bit separated in all of them and I was the only positive trans man I knew. I suppose there aren’t that many of us but we are out there. I had to educate my doctors too, like at my first appointment, he tried to hand a booklet for women with HIV. I had people asking me how it was even possible for a trans guy to get HIV and stuff like that. It was exhausting honestly.”

Luka says that actually, the stigma around being trans has been harder to deal with than the stigma around being HIV positive. “I think if it wasn’t for transphobia, I’d have probably noticed HIV stigma a lot more. It was hard going though at times, if you’re not getting shit for being trans and dealing with some of the ridiculous assertions people make there, you’re dealing with ridiculous assertions from people who are ignorant about HIV. I think for many people who get diagnosed, they’re not used to dealing with that sort of thing so it really does change their world. I am very lucky in that most people in my life knew about HIV so I didn’t get much stigma from the people I knew. In many ways being trans in the last few years has been harder than being HIV+ speaking for my own experiences.”

Luckily, Luka now knows that there is no one he has to prove himself to, other than himself. “I’d tell my younger tell not to feel guilty and not to worry about trying to fit in as much. There’s a place for you at the gay scene table and people will love you for exactly who you are. You don’t have to prove yourself to anyone but you.”

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