Words by Stuart Haggas - @workofstuart

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What’s your type? Daddies? Twinks? Smooth shaved cheeks or a hipster beard? Muscular? Hairy bear? We all have our likes and dislikes when it comes to what we want in a sexual partner, but there can be a thin line between preference and prejudice. While it might be acceptable to express requirements such as a sense of humour or a desire for wild rather than mild, is it acceptable to require a potential sexual partner to say he’s HIV-negative? And is it acceptable to reject or block those who say they’re HIV-positive?

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For the past five years, FS has surveyed its readers about HIV stigma. Much has changed in that time, including game-changing medical breakthroughs around HIV treatment and HIV prevention, yet one thing remains relatively constant. In 2014, 96% of the men surveyed by FS said there was a degree of stigma associated with HIV. That figure increased marginally in 2015 and 2016 to 97%. Having asked the very same question to almost 400 readers in 2018, 95% say there’s still a degree of stigma.

We’re at a new milestone in LGBTQ history: an era of U=U (when a person living with HIV and on treatment has an undetectable viral load, meaning the virus is untransmittable to partners) and PrEP (a pill that, if taken as prescribed, prevents HIV infection). With these new arms in our arsenal, why are many gay and bi men with HIV still stigmatised and shunned, particularly by others on the gay scene?

WHY?

The answer appears to boil down to three words: fear, ignorance and misinformation.

“I have been told by a date that they would kill themselves if they had HIV just after I disclosed my status to them,” explains Dale, 29 from London. “I’ve also had a partner stop having sex with me once I told him my status.”

“I was dating and it was going well. I told them I was HIV-positive and then they said they weren’t ready for that and didn’t want to ruin their lives,” says Mike, 33 from the Republic of Ireland. “I advised them that I was undetectable but it didn’t make a difference. They thought they were going to die.”

“It’s uneducated people not knowing that U=U means you can’t pass on HIV,” says Phil, 35 from the Midlands. “Truth be told, I wasn’t educated and when  I was diagnosed I felt completely alone and helpless, as I didn’t know very much about HIV, just that it wasn’t something you never wanted to get.”

“People still seem to think it’s as easy to catch as a cold, even gay men who should be more educated,” adds Scott, 52 from London.

“People still feel like they need to treat you differently,” says David, 44 from London. “Also, I don’t always feel like people understand about undetectability and I am still educating those who don’t understand.”

“People still think it happens to ‘other’ people and judge ‘them’ negatively for it. Also there is still fear of transmission as not enough people understand U=U,” agrees Gary, 51 from London.

“The U=U movement, and the increase of PrEP usage should in theory help the battle against HIV stigma,” says Ian Howley, Chief Executive of HERO, the parent organisation of GMFA. “However, what we are seeing is that it’s not enough to just talk about HIV stigma and the impact it can have, but we need to emotionally connect with gay men who hold such stigmatising views. We have all the scientific information which says that someone who is HIV-undetectable cannot pass on the virus sexually. We know that PrEP is 99% effective in stopping HIV transmission – but we live in an era where emotions rule over facts. We need to adopt this approach and figure out how we can stop stigma towards those living with HIV, and those wanting to prevent HIV with PrEP in an emotive way.” 

SEEING THE LIGHT

Some HIV-positive gay men are however starting to see the light at the end of the tunnel.

“There’s lots of ignorance about what being HIV-positive means today. It’s among the straight community, but inexplicably also among gay and bi men, who can be the most stigmatising,” says Jason, 46 from the Midlands. “Many still use the word ‘clean’ to mean negative, which is outdated and insulting. Many either do not know or do not yet trust U=U. But I haven’t experienced rejection because of my status for a long time, probably because I decided to be open about it. Hopefully that helps to demystify it for people, that I’m happy, healthy and HIV doesn’t control me.”

“People don’t understand U=U and its meaning, but it has improved in the nine years since I was diagnosed,” adds Spencer, 35 from London.

TURNING POINT?

Although 95% of the men we surveyed say there’s still a degree of stigma associated with living with HIV, 55% think there’s less stigma to do with HIV than there was two to three years ago.

Even though the proportion of people who encounter stigma remains unchanged, it may be that they encounter stigma less often or in less extreme forms,” says Matthew Hodson, Executive Director of NAM. “Every day I see some evidence of stigma, often expressed as a result of ignorance or fear. But almost every day I hear from someone who has just learned about the preventative impact of HIV treatment. As the song goes, there may be mountains in our way, but we climb a step every day.”

“I think this is due to the hard work HIV organisations have done to dispel some of the myths that exist,” adds Ian Howley. “We’re working on humanising HIV stigma with real people. When people see others who are just like them they are more likely to think differently. Facts, figures and words are great, but when we emotionally connect to an issue it shows that it can work.

“Last year we released a video online called ‘The Undetectables’ where we had people living with HIV talk about what HIV-undetectable means in plain language,” Ian continues. “The video became our most viewed intervention. What it did was take the U=U movement and make it human. I do think we are at a turning point when it comes to HIV stigma in our community, but it may take a long time to eradicate altogether.”

HUMANISING HIV STIGMA

So let’s hear from real readers of FS about their first-hand experiences of HIV stigma:

“I read ‘clean only/negative only’ a lot on app profiles and even from those who state that they are on PrEP,” says Pip, 30 from London. “I have received comments about how my behaviour is what led to my infection and there is still that idea that those with HIV are deserving of it because of their actions in the wider community.”

“It’s believed HIV only effects slutty, promiscuous gays,” adds Raleigh, 33 from London. “I was infected by a partner who I was faithful to for two years.”

“’Be clean’ or ‘I’m negative, you be the same’ is still something I see with alarming regularity on apps like Grindr,” says Dale, 29 from London. “More commonly though, people just simply tend to ghost me when I tell them my status rather than convey any kind of obvious negative reaction. They may even say they are fine with it but you then never hear from them again.”

“I had one guy, maybe 18 months ago, who saw that I had put ‘poz’ on Scruff but hadn’t yet on Grindr (it’s a lot judgier!) and called me a liar and all sorts,” says Jason, 46 from the Midlands. “I reminded him that telling someone you’re positive is hard. And you have to do it over and over again. Guys ask me how I was infected and I tell them it was from sex with a guy I met once and against whom I have no malice. I fight the stigma with my peace.”

“Guys make assumptions about you based on your status,” says Alex, 33 from north west England. “A few months ago a guy said I was careless, despite telling me he’d just cycled home drunk.”

“I’m HIV-positive and I get that ‘oh you must have been a slut or stupid’ reaction the whole time,” says Daniel, 46 from London. “In my life I’ve been both slutty and stupid, but no more so than the people who treat me with that contempt.” 

UNCLEAN?

How does it feel when someone makes stigmatising remarks? Words that appeared frequently in the survey results include: annoyed, shamed, alone, depressed, unwanted, discouraged, despondent, judged, angry, victimised and dirty.

“I feel belittled and sometimes baffled at people’s ignorance,” says Paul, 34 from the Republic of Ireland. “I have been called a slut, an attention seeker, and even accused of using my status to make people feel sorry for me and thus do what I want.”

“I feel rejected and it is particularly hurtful if they are gay,” says Paul, 51 from south east England. “I have an expectation that they would be knowledgeable and compassionate, but they seldom are.”

“I feel discouraged, unclean and disappointed that the current state of medicine and treatment is not well known,” adds John, 25.

“It alienates me. I’m bemused by negative statements relating to HIV,” says Andrew, 38 from London. “I just wish the undetectable and PrEP message becomes more and more ingrained on people’s minds.”

DEFIANCE

Some readers however remain defiant in the face of HIV stigma.

“I correct their ignorance with knowledge. If I see malice in them, they’re done. If I see ignorance, I tell them the facts,” says Jason, 46 from the Midlands.

“Either I choose to educate them or I ignore/block them,” adds Joe, 30 from London. “I don’t take their opinions to heart, because it either comes from a lack of understanding or because they’re an idiot.”

But others admit that HIV stigma has led them to not always disclosing their HIV status.

“Stigma stopped me from talking about my own HIV status for years,” explains Daniel, 46 from London. “Even now I still find myself taking a deep breath before telling someone new, but I’ve done it often enough now to know that if they have a bad reaction, that’s about them, not me.”

“I don’t tell people my status when hooking up,” admits Alex, 33 from north west England. “There’s no need. I’m undetectable and can’t pass it on. I don’t ask for or give a medical history of anything else.”

“I used to be quite open, and frequently was told to stick to my own sort,” adds Scott, 52 from London. “I’m undetectable and only play sober and safe, so I no longer disclose which pushes it deeper.”

APP STIGMA

Gay and bi men can encounter HIV stigma in every aspect of their daily life – but our survey findings show it’s most prevalent on the gay scene itself, particularly via gay dating apps. That was the case in 2014, and the survey shows that it remains so in 2018.

	2014	2015	2016	2018
Gay apps	84%	87%	84%	85%
Gay clubs	33%	24%	22%	29%
Gay pubs	32%	24%	19%	35%
At work	19%	16%	17%	23%
Facebook	17%	16%	22%	24%
Saunas	16%	12%	9%	15%
Twitter	7%	7%	10%	19%
School/college	6%	4%	5%	4%
Hook-up spots	6%	4%	5%	13%

“I’ve seen some efforts by dating apps to ensure they provide a kinder environment,” says Matthew Hodson. “I think dating apps and social media only reflect what people are really feeling, often giving them greater opportunity to express views that they know aren’t acceptable because they have some distance and some anonymity. It would be great to see more widespread understanding that HIV stigma (serophobia) was unacceptable, especially from people who aren’t HIV-positive themselves. I’d also like to see similar tactics adopted to tackle the racism and cruelty that is often expressed on dating apps.”

“Tackling HIV stigma on dating apps needs to follow the same approach as social media,” adds Ian Howley. “Even though trolls still exist on the likes of 

Dating and sex apps need to do the same. We need better reporting systems in place, and these apps need to publically state how they tackle harassment. But we also must take away the power these people have. We at HERO have been looking at building up our methods to train people living with HIV how to deal with stigma on apps. If we can train people to get to a stage where receiving a negative comment does not impact their self-esteem then that takes away the power of the comment.”

Any advice on how to achieve this?

“Our advice has always been, if you receive comments it’s best not to engage,” Ian explains. “Take a screenshot, report it, but do not engage with this person. I know many feel like they are trying to educate, but the reality is the person you are engaging with just wants a response and wants you to react to them. If trolls didn’t get responses they would stop sending hurtful comments. Take back the power.”

THE U=U AND PrEP EFFECT

We may finally have reached a turning point, thanks in part to U=U and PrEP. 56% think that increased knowledge around being undetectable has helped reduce HIV stigma, and 51% think the greater prevalence of the HIV prevention drug PrEP has also helped reduce stigma.

What impact is U=U having on HIV stigma?

“It’s gradually making gay sex less scary,” explains Jason, 46 from the Midlands. “We’ve had HIV hanging over us for 30-odd years. Sex ought to be fear free. And that’s what guys being undetectable has done. We’re safe and our partners are safe. I’ve had better sex since then than I ever had before. And gradually that message is getting out there and people are accepting it. But it’s slow. HIV is still the bogeyman for a lot of guys and they don’t trust U=U yet. It will take time. Apps have been helpful and having it as an option to declare your status has given guys the confidence to share and be open.”

“When people know that U=U, it does challenge a lot of their fears and prejudices,” agrees Daniel, 46 from London. “However more work needs to be done on this. I’m amazed by how many people still have no idea.”

PrEP is similarly impacting HIV stigma.

“Those taking PrEP tend to have more knowledge and are less likely to have an issue with a partner being positive,” says Robbie, 35 from south east England.

“It has facilitated the conversation about treatment as prevention,” adds Gary, 51 from London, “as well as moving the conversation on from purely condom-related ‘safer sex’.”

Nevertheless, the use of PrEP is a contentious one, with a side-effect being the emergence of a whole new stigma.

“It’s a yes and no,” says Jason, 46 from the Midlands. “Yes, it’s reduced the fear of HIV and of the people who have it. No, it’s led to a different kind of stigma. I still see PrEP shaming online and a refusal to accept the science.”

“I see a lot of people condemning people who use PrEP and trying to slut shame them,” agrees Daniel, 46 from London. “A lot of times I get the feeling that it’s because deep down those same people still believe that being gay is inherently wrong and so the only way you can be a ‘good gay’ is if you engage in polite, unenjoyable sex.”

SCIENCE OVER STIGMA

“I think that knowing that someone with HIV, who is undetectable on treatment, can’t pass the virus on sexually has the potential to be a game changer,” acknowledges Matthew Hodson.

“I’ve seen people go within five minutes from saying that they’d never have sex with anyone living with the virus, to acknowledging that their reaction was only based on fear and ignorance. When you strip that fear and stigma away, when you accept science over stigma, everything changes.

“PrEP is also helpful as it means that people who aren’t living with HIV have something that they can do which provides almost 100% protection against HIV. I see a lot of people expressing fears that maybe someone would say that they were undetectable when they were not, as if people with HIV were in any way less trustworthy than other people (I’m aware of no evidence to support this), but PrEP can provide the assurance of taking the precaution for yourself.”

“The increased knowledge of HIV-undetectable and PrEP has certainly helped in reducing HIV stigma,” 

agrees Ian Howley. “But considering what the science says about U=U and PrEP, we should not be seeing high instances of stigma towards those living we HIV and on PrEP. What these figures are showing is that there are lots of people out there who just don’t want to believe the science behind both movements. How do you tackle this? When people don’t care about facts, there’s very little we can do in an educational setting. That’s where society needs to step up and tackle it itself.

“We at HERO can only do so much to get the facts out there, and we can help try and humanise HIV stigma and PrEP – but it’s going to have to come down to allies of these movements to talk with their friends and families to help chip away at some of those who just don’t care. Peer-support and peer-pressure on the ground can do wonders in the battle against HIV stigma. My advice would be, when you see or hear stigma towards those living with HIV, then challenge it. We can’t let people think they can say and do what they like without any consequences.”

THE FIGHT CONTINUES

Are we trapped in an eternal battle against HIV, HIV stigma, and slut shaming – or are we now on the brink of victory? There was, and still remains, a ignorant perception that those who become infected with HIV are sluts and now, those who choose to take PrEP to prevent HIV infection are also branded sluts. Will the cycle of stigma and slut shaming ever end?

“Since I joined HERO in 2010, I’ve seen how our community has grown in its fight against HIV and HIV stigma,” says Ian Howley. “In 2018, living with HIV is a manageable condition with very little impact on your life or long term health. But we see that having the condition can still have an impact on people’s self-worth and mental health. It’s by no means a walk in the park, and because of that we must do more to support those living with HIV.

“Combating HIV stigma remains one of HERO’s main missions because we see through the work GMFA does that when we talk with people living with HIV the biggest issue they face is the stigma they receive.

“Stigma can mess up someone’s confidence. And over time constant stigma can have a huge impact on people’s mental health. Our greatest challenge at HERO is getting people to a place where living with HIV and dealing with stigma does not impact their mental health.

“If we can do that then we will win the fight against stigma and have a happier and healthier community overall.”