...these HIV-positive men want to talk to you. 

By Stuart Haggas | @GetStuart

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In 2015, FS magazine surveyed over 500 gay men living with HIV. 94% of these men think there’s a degree of stigma associated with being HIV-positive. For many, the stigma associated with HIV infection is worse than living with HIV itself. Stigma hampers the actions that we need if we are going to be successful in reducing new HIV infections: testing, talking, honesty and openness.

KISS MY HONESTY

Meeting a guy for a date or a hook-up can involve untold perils and pitfalls. For HIV-positive men who choose to reveal their status, perils can include anything from outright rejection to emotional, verbal or even physical abuse. Such reactions are not isolated incidents:

69% of the men we surveyed admitted they’ve faced sexual rejection for disclosing their status.

“It’s happened so many times it’s hard to give an exact story,” says Skot, 28 from Burnley. “Before I openly put my status on my profiles, I would be chatting to guys literally all day and night for days or weeks at a time. When it came to telling them, usually before arranging a first date, the tone always changed. If I’d told people in a club, they just say ‘I’m really sorry, I can’t risk it.’ A lot of lads just don’t say they have it. I simply cannot and will not do that, even if it’s to my own detriment.”

“The first time was on a date,” says Fraser, 49 from London. “He’d been the one keen to meet up. So as the date progressed I dropped the fact I had HIV into the conversation. His body language changed, and immediately I knew there was going to be no pumping that night.”

“I went on a date with a trainee doctor. He said he was going to specialise in sexual health. The date was going really well,” says Ben, 30 from Brighton, “until I revealed my positive status. Then he just wasn’t interested.”

“I went out on a date, and the guy seemed OK with my status,” says Adam, 28 from London. “Then when we kissed he suddenly pulled his tongue out of my mouth and spat my saliva out. It was the most awkward moment ever.”

“Several guys I used to hook up with regularly (always for safer sex) just simply ignored me when I told them I was positive,” says Paul, 51 from Reading. “One other guy I met at a cruising ground and had sex with – it was safe but he was prepared to be unsafe – then wanted to meet up but backed off when I said I was positive. He would have had unsafe sex with me in ignorance – but not safer sex knowing I am positive.”

“They only want negative people… so I told them that they should treat everyone the same because not everyone is honest, says Bruce, 44 from London, “and that sleeping with someone who knows their status and is undetectable is a lot safer than some of these chemsex queens who bareback all the time and never get checked up, think they have nothing, and are a lot more risky to be jumping into bed with. So take my advice, and sleep with someone who is honest from the start.”

KISS MY APP

HIV-positive gay men deal with stigma in many areas of their everyday lives. 16% said they’ve faced stigma at work, 4% at school/college, 16% on Facebook, and 7% on Twitter.

It’s prevalent on Britain’s gay scene, with 24% saying they’ve had to deal with HIV stigma in gay pubs and clubs, 12% in saunas, and 4% in cruising areas. But by far the highest level of HIV stigma comes via gay dating apps, with 87% of those surveyed saying they’ve encountered stigma on apps including Grindr and Scruff.

“It’s a regular occurrence on dating apps,” says Paul, 29 from London. “Everything will be great until my status is disclosed and then bang… they block me. Although the way I see it is that it gets rid of all the shit guys. The ones who are worthy of me stick around regardless of my status.”

“It’s happened many times,” agrees David, 35 from Glasgow. “Most of the time they just block me, so the rejection is clear. Sometimes guys have become abusive, especially if they’ve been hinting at wanting bareback sex. I tell them my status and they then tell me how dirty I am.”

“I get asked on dating sites like Grindr,” says Gavin, 30 from Cardiff. “Guys advertise for bareback sex. It’s something I like and so I respond. I then get asked if I’m clean – which is a word I cannot stand anyway, and I know what’s gonna happen next. I reply saying ‘no’, as I like to be honest. I then get a ‘sorry fella but I can’t meet you’. I have also replied ‘yes, I am clean’ and we have met. I don’t get it. What’s wrong with people? Guys are taking men’s word for it. Have some self-respect and be responsible.”

“I told the guy I was going to meet I was poz,” says Ben, 39, from Oldham, “to which he replied that maybe it’s best if we just meet as mates and stay that way. I told him not to bother.”

This comes as no surprise to Executive Director of NAM, Matthew Hodson. “Someone with HIV is most likely to encounter stigma in the places where they are most likely to disclose their status,” he explains. “People are perhaps more likely to disclose on dating apps, as part of sexual negotiation, and to disclose to people who are not already their friends, so it doesn’t surprise me that it’s on dating apps where people are most likely to encounter HIV stigma. The same would be true of encountering other prejudices. We know that experience of direct racism is a persistent problem for black and other minority ethnic men on dating apps.”

EXTREME RESPONSE

Sometimes the reaction goes beyond being rejected, blanked or blocked.

“Guys who were into me and fancied me completely lost all interest, and were even worried that they could have gotten HIV from me coz we’d kissed,” says Patrick, 40 from Waterford. “Twice guys got violent and punched me. Now I won’t even meet a guy for a drink unless he knows my status first and is comfortable with what might develop sexually.”

“I told a chap I had HIV in the car after we had been dating for a few weeks,“ says Paul, 30 from Barnstaple. “He told me to get out, miles from my home, and drove away.”

“People assume I slept about,” says Kev, 36 from Essex, “and someone on a date even spat at me.”

“I disclosed my status to a guy who had asked me for bareback sex. He decided to use a condom. It was used correctly and I’m undetectable,” explains Jon, 26 from Walsall. “six months later he chased me on Grindr, telling me I’d infected him even though I’d used a condom. It’s an awful feeling to know he thinks it was my fault. Who knows who he’s had bareback sex with, possibly with them not being truthful about their status.”

“I fell asleep in a sauna cabin and woke up with a guy trying to have sex with me with no condom,” says Andrew, 35 from London. “I told him I am positive and he went nuts. He left the sauna and complained to the manager. The manager initially wanted to ask me to leave, but I stood my ground. I was asleep and that guy was having sex with me while I was asleep, essentially he was raping me and he felt he was the victim of the whole thing.”

UNDERSTANDING

Despite the emotional anguish, pain and isolation that rejection can cause, some HIV-positive men we spoke to were sympathetic to those who reject them.

“I always disclose it, and several guys have said it’s not for them,” says Daniel, 32 from Chester. “Which is completely fine and their choice. There is a risk, however small, so I think they’re entitled to say no.”

“I don’t think there’s anything particularly wrong with that,” agrees Andy, 48 from Poole. “I think it’s OK for people to prefer to reduce the risks as far as possible by avoiding that situation. I’ve chosen not to have sex with HIV-negative people before, for pretty much the same reason.”

“To be honest I fully understand the rejection,” adds Stephen, 38 from London. “I don’t blame them. But I wish they weren’t rude or aggressive about it.”

Undetectable 

Many of the men we surveyed think that a mix of fear and ignorance are largely responsible for the stigma they face. One relatively new and significant factor is the notion of ‘HIV-undetectable’ and the uncertainty and confusion about what this actually means.

“This year we’ve seen more data reported which shows that the risk of transmission of HIV from a person with an undetectable viral load is very low, and may actually be zero,” explains NAM’s Matthew Hodson. “Getting the message out that people who are undetectable do not present a significant risk is slow and hard work.”

“We must continue to educate and inform,” adds Andre Smith of Positive East. “Many people are still unaware of how difficult it is for an HIV-positive person who is on meds and registers an undetectable viral load to pass on the virus – the transmission risk is significantly low.”

“Many people living with HIV are wary of it,” Matthew admits, “having been conditioned to see themselves as a danger to their sexual partners. However we are increasingly seeing people talk about ‘undetectable’ as a status and to initiate new discussions and debate about the flaws in a strategy of refusing to have sex with men with HIV. GMFA and FS have been in the forefront of highlighting this discussion within the UK and we’ve seen the direct impact that education about viral load can have on the way that men without HIV think about how to manage their sexual safety.”

KISS MY UNDETECTABLE STATUS

87% of the HIV-positive men we surveyed are HIV-undetectable, which, as Matthew and Andre acknowledge, means it’s very unlikely they’ll pass HIV on to someone else. Men who are undetectable nevertheless find they often have to explain this to sexual partners.

“On the whole, maybe eight time out of ten, I have to explain what HIV-undetectable means,” says TJ, 28 from Oxford. “I think people just see HIV and nothing more.”

“I have told people I’m undetectable,” says James, 40 from Manchester, “and have been fine once I’ve talked to them about it. But there are some who still just don’t understand.”

82% of the men we surveyed have at some stage told someone (such as a prospective sexual partner) that they’re undetectable – with varied levels of success.

“I’ve had mixed reactions,” says Jack, 31 from Holmfirth. “I’ve lost count of the number of times I’ve had to explain. Some guys are very sceptical, and seem to think it’s a ploy to get them to agree to have sex with me. Others are more receptive.”

“I’ve had to explain what that was,” says Cameron, 36 from London. “A lot of the time guys aren’t OK with it in the moment, but relax a bit if they have time to think about it – I would also want to fact-check after getting info like that!”

“Sometimes it’s cool,” says Darren, 41 from London. “Other times they don’t get it and they leave.”

“I’ve had to explain what it was,” says Adam, 28 from London. “It didn’t change the perception they already had in their head.”

“It did not seem to reduce their fear of contracting the virus,” says John, 54 from London. “They did not seem to believe when I told them I might not be a very big risk at all, but someone untested might infect them without knowing.”

FEAR OF STIGMA

90% of the HIV-positive men we surveyed said they believe that stigma about HIV is likely to discourage gay men who’ve tested positive from disclosing their status to others (friends, family, sex partners, etc.) – and 75% are themselves reluctant to tell others for fear of stigma.

“This doesn’t surprise me in the slightest,” says Andre of Positive East. “One thing I’ve learned, both as a counsellor and in my own personal experience, is that beyond the glitter and façade of all those external things that society says we need in order to be happy, what it really boils down to is connectedness with other human beings – we all want it, we all need it. The psychological impact of being rejected for being HIV-positive can be deeply wounding, and often leaves in its wake a belief along the lines of ‘if I disclose my status, there is a good chance that I won’t be worthy of connection in that person’s eyes.’ So I totally get why some people are reluctant to reveal their status.”

“The FS Big Gay Sex Survey found that 44% of men who believed themselves to be HIV-negative wouldn’t have sex with someone who was open about living with HIV,” adds NAM’s Matthew. “This figure is actually lower than previous surveys have found, so perhaps we are moving in a better direction, but we’re still at a place where almost half of HIV-negative men would reject someone if they disclosed. Given that there is a considerable likelihood of rejection, it’s unsurprising that many men still choose not to disclose.

“The thinking behind blanket sexual rejection of anyone who discloses is fundamentally flawed,” Matthew continues. “It discriminates against those who test and are willing to be open and honest, while not preventing risks from those who do not test, who won’t be on treatment and who will be considerably more infectious. If you are absolutely certain that you are not living with HIV, recognise that you will meet men who are, and that they are not to be feared. If you expect people to disclose their HIV status to you, which is very personal information, treat the person who does so with respect and dignity.”

ASSUMPTIONS

There’s often an assumption that HIV-positive men must be promiscuous, otherwise they wouldn’t have been infected, which of course it not necessarily the case.

“I’ve been made to feel like a slut many times by gay and straight friends,” says Sunny, 31 from London, “but the assumption I was promiscuous came only after I was diagnosed.”

“They think you must have been going to sleazy clubs and having a lot of bareback sex and be into sex parties and drugs,” says Mayank, 30 from Croydon, “and you can’t be loyal. It is almost impossible to get into a decent relationship after the diagnosis. A lot of gay men will avoid dating an HIV-positive guy.”

KISS MY RELATIONSHIP

If the stigma of HIV makes casual hook-ups and dates more difficult, how challenging are relationships?

Just over half (51%) of the HIV-positive men we surveyed are single, 25% have a boyfriend or long-term partner, 12% are married/civil partnered, 7% are dating, and 5% are in an open relationship – but altogether, 64% said that living with HIV makes it difficult to be in a relationship.

“It’s just another hurdle to ask someone to jump,” says Jamie, 35 from London. “Plus finding the best time to disclose can be tricky.”

“Finding a partner is challenging,” agrees Ed, 40 from Southampton. “Several friends have suggested I ‘find someone else who is poz’. I resent the idea of being restricted to other positive men only. I don’t think sharing an illness is a sound basis for a relationship. But meeting guys who are negative is problematic in itself as I worry about how they will react.”

It would appear, however, that the reaction might not be as bad as some would think. Of the HIV-positive men we surveyed who are in a relationship, 32% have a HIV-positive partner, while 68% have a HIV-negative partner.

“Potential dates and my current boyfriend have not been fazed by my status,” says Ben, 39 from Oldham. “I’ve dated both poz and neg guys, and my current boyfriend is neg. It’s never been an issue for me or him, but we talked about it first and made sure he had access to all the information he needed.”

KISS MY STATUS

For HIV stigma to be truly banished, attitudes within the gay community and beyond must continue to be challenged in order for them to change.

“I think that shining the spotlight on the subject of HIV stigma through articles like this has helped towards creating a shift in consciousness, attitude and understanding of the prejudices faced by those living with HIV,” says Positive East’s Andre. “The shift is not just with negative gay men, but seems to be slowly permeating into the collective consciousness of society generally. That said, there is still more work to do until we get to the point where we respond to, and accept, someone living with HIV in the same way we would respond to someone living with diabetes.”

“We still have mountains to climb,” agrees NAMs Matthew. “But I see more and better conversations happening around HIV and around the transmission risks when someone is undetectable. It will be a long time before someone will be able to go a whole year without encountering stigma, but I hope that the more we have honest, frank discussions, the fewer people there will be who will continue to hold such ignorant and stigmatising views.”