News Ticker

The naked truth about HIV stigma

Many believe that a lack of education still exists about HIV, PrEP, and what HIV-undetectable means, even within the gay community – and ignorance leads to fear.

 

 Words by Stuart Haggas | @GetStuart  

 

The gay community has its own divisions, including the prejudice often faced by those living with HIV. Readers of FS who’ve been diagnosed HIV-positive tell us they face stigma in many places, but the place they face it the most is on the gay scene itself.

At a time when the world’s LGBT population may need to stand together, can we be united if we’re divided by HIV prejudice and stigma?

UNITED APPROACH

“We’ve seen some seismic events this year, where the popular vote defied both polling and the majority of expert opinion,” acknowledges Matthew Hodson, Executive Director of NAM.

“I’d like to believe that as a community we will only become stronger when faced with adversity, but these are strange and turbulent times and it’s hard to hold on to anything as a certainty. I strongly believe though that we will be better equipped to meet the challenges that we face if we can work together and reject prejudice and stigma.”

“Sometimes it feels like our community is more fractured and disparate than ever,” adds Tom Hayes, Editor in Chief of beyondpositive.org.

“I can certainly identify with the guys who felt that the most stigma towards those of us living with HIV comes from within our own community. It genuinely does hurt when it comes from people you feel should empathise with our situation. I’d like to hope that the LGBT community will come together in the face of a difficult few years ahead. I know we can do it – this past year the sense of community following the Orlando massacre was just remarkable. But can we make the sustained effort? We’ll have to wait and see.”

THE BIG ISSUE

For the third year in a row, FS is commemorating World AIDS Day with a special ‘HIV Stripped Bare’ issue, exposing the stigma faced by those living with HIV. Much progress has been made in recent years, from PrEP, which reduces the risk of getting HIV, to antiretroviral therapy that can result in an undetectable viral load, so HIV-positive people become non-infectious.

“We’ve known for some time that effective HIV treatment makes people much less likely to pass on the virus,” Matthew explains. “Since the first HIV Stripped Bare feature there’s been a whole host of new data that now leaves us confident that the risk of transmission when someone is undetectable is either non-existent or so tiny as not to be a concern.”

Although the health implications that come with an HIV-positive diagnosis may now be manageable, the stigma associated with having HIV remains a big issue – in fact, for many gay men living with HIV in Britain today, stigma is the big HIV issue.

“I think beating stigma is a much bigger challenge than beating the virus, sadly,” acknowledges Tom from beyondpositive. “We’ve cured hepatitis C, we can cure most STIs and we can even cure leprosy, but they’re all still stigmatised. A medical cure does not equal a societal cure. That being said, I think each medical advance we make (such as treatment, then treatment as prevention, then PrEP) has given us a huge opportunity to talk to our community and the public about what living with HIV means today – hopefully chipping away at the stigma bit by bit. I think it’s going to be a long and difficult journey, but I believe we can do it.”

GAY SCENE

For FS’ first issue of ‘HIV Stripped Bare’ in 2014, 96% of readers said in a survey that there’s stigma associated with being HIV-positive. That increased to 97% in 2015. In 2016, having surveyed 750 readers, 97% say they believe there’s stigma associated with being HIV-positive. And the vast majority believe there’s far greater stigma on the gay scene than anywhere else.

hiv-stigma-in-gay-community

Stigma sometimes takes the form of cruel gossip. “I was in a club with some friends, and one of those unaware of my status started bitching about this other guy having AIDS and sleeping around. I knew the guy really well from a support group, and knew how hard he found it to tell people and meet someone meaningful,” says Patrick from Cork. “It was just so hurtful that somebody in the gay community would be so insensitive and taken in by stereotypes.”

It may be a negative reaction to being honest and upfront. “One time I went on a date and decided to be upfront about my status,” says Dale from London. “His reply was ‘I’d kill myself if I had that’, which offended

me on a deeply personal level. It was like I had no right to exist for having something I didn’t choose to have. After that he proceeded to very obviously go through his dating apps and reply to other guy’s messages in front of me, as if to show me that he had other options and I was no longer one of them.”

“My story is so commonplace that it’s mundane,” adds Jonah from London. “I was in a club with a guy who I’d just started seeing, and I told him that I was living with HIV. We’d had just a couple of dates and I felt it was important that he knew before we went any further. He didn’t even say anything to me, just walked out, leaving me feeling like shit.”

It can also be sexual rejection. “I disclosed my status to a guy I hooked up with on Grindr who basically said that he would feel paranoid every step of the way and that it was best to not engage in sexual intercourse,” says Jay from London, “but that I could suck his cock if I wanted. This was even after I had mentioned that I was undetectable.”

“Thanks for telling me but it’s not for me. ‘Appreciate your honesty but I can’t take the risk’. ‘I fancy you but I could never have sex with you now I know what I know’. ‘Don’t message me again or I will block you’. ‘Fuck off you cumdump scumbag’. These are just a few of reactions I have had to deal with after disclosing my status,” says Brett from Belfast.

APP ABUSE

The place where gay men experience the most HIV stigma by far is on gay dating apps.

“When I’m cruising online, I usually disclose my status to a guy when it seems like we’re getting ready to make a date,” says Andrew from London. “Most of the time, guys respond with ‘thanks for being upfront’, and then don’t want to meet any more.”

“It’s so common for guys to go cold, or just straight up block you on apps once they discover you’re HIV-positive,” says Tom from Wiltshire. “I don’t think it’s always about fear of transmission, people just think of you differently when they know you have it. Maybe they perceive you to be less attractive. The ultimate turn off.”

“When I’ve turned down guys on Grindr, some get offended and tell me that I can’t be that picky, and that I’m a slut for having HIV at such a young age,” says Thomas from Aberstwyth.

“People say I must’ve been a slut for getting it,” agrees Joe from Worthing, “or people block you as soon as you tell them, and tell me I’m not ‘clean’ for having HIV.”

CLEAN

Many gay men told us that one particularly objectionable aspect of using dating apps is when others use language such as ‘clean’ and ‘dirty’ to categorise HIV-negative and HIV-positive men.

“’Be clean’ is something I see repeatedly on dating apps,” says Dale. “Having HIV doesn’t make a person dirty, nor does having sex in general. People seem to want to think the worst of those with HIV and assume that we are to blame for risky behaviour, which is just not the case for a lot of us.”

“Hook-up apps specifying neg only,” says Carl from London. “I get fed up of seeing the date someone last tested neg – it doesn’t mean they are neg now.”

“You don’t have to look hard to see on dating apps or in online comments people being so scared of catching HIV that they would do anything to avoid contact with people living with HIV, sexual or otherwise,” agrees Jonah.

TROLLING

“We’ve seen a rise in online trolling generally in the last few years by so called ‘keyboard warriors’,” says Tom from beyondpositive. “There’s something about being anonymous online that gives people a sense of confidence and righteousness that, let’s face it, is sorely undeserved.”

“It’s always been easier to express prejudice remotely (e.g. online) than it is to express it to someone’s face,” agrees NAM’s Matthew Hodson. “It’s during sexual negotiation that the fear of people living with HIV is most likely to be expressed. So it’s no surprise to me that dating apps, where sexual negotiation can be conducted remotely, provide the perfect conditions for people to express these attitudes.”

The FS survey results from the past three years reinforce this. Gay dating apps remain by far the place where HIV-positive men experience the most stigma, but Facebook and Twitter are seeing gradual increases.

“Only last week I tweeted about World AIDS Day, asking what people are doing to be more HIV aware,” says Paul from London. “The response I got back was ‘AVOIDING PEOPLE WITH HIV’.”

By contrast, it appears that HIV-positive gay men are facing less stigma in gay pubs, clubs and saunas – but this may simply be because it’s easier to be a troll online than it is when face-to-face.

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