HIV Stripped Bare | Part 3: The naked truth about HIV stigma Words by Stuart Haggas | @GetStuart | Photos: © Chris Jepson www.chrisjepson.com Shock election results in the UK and the United States remind us that we live in a world that’s more polarised and divided than we may have thought. Thanks to marginal victories, Britain is heading for Brexit and Donald Trump is heading for the White House – much to the disbelief and anger of the millions who voted for the complete opposite. Following these elections, both Britain and America saw an increase in hate crime towards minorities, including LGBT people. Hillary Clinton’s inability to break the ‘glass ceiling’ by becoming America’s first female President can also be considered a reminder of the fragile ground that gay men and lesbians stand upon – so fragile that it too could break like glass. Although it’s not entirely clear what Donald Trump will do once he’s sworn in as President, some of his decisions are likely to impact LGBT people in America and beyond: for example, there have been fears that his appointments to the Supreme Court could overturn same-sex marriage rulings, and his vice president Mike Pence did previously propose that AIDS funding be cut and instead used for ‘gay cure’ therapy. Anti-gay policies would be popular with Trump’s core supporters – and could have a significant domino effect across the whole world. 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. 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. POSITIVE REACTIONS Common reactions to such prejudicial behaviour include feeling angry, sad, shamed, afraid, worthless, disappointed and depressed. Some ignore it. “I just ignore it and move on, they’re not worth my time,” says Matt from London. Others aren’t afraid to show their anger and frustration. “They get the full force of my wrath,” says John from Suffolk. “I’ve been diagnosed for over 15 years and am comfortable with my diagnosis. I am quite fit and attractive for my age, I have no telltale signs I’m HIV-positive, I’m highly intelligent, have a very decent job and a life, and have no qualms about comparing myself to others. I am very decent to everyone but I will NOT tolerate HIV shaming, full stop.” “The first reaction is embarrassment. I feel like I shouldn’t have mentioned it at all,” says Thomas. “Then I feel angry that I’ve let someone make me feel that way, as what I’ve done is an honest and brave thing.” Others try to challenge inaccurate and ill-informed opinions. “I think they are ignorant and not worth my time,” says Carl. “I used to try and educate, but sometimes you just want a shag and move on.” “I hooked up with a guy who admitted to having bareback sex with guys he didn’t know,” says Chris from Hull. “He didn’t know his own status, I even found out he hadn’t had a hep B injection. We were going to have protected sex and I was the one being penetrated, but when he learnt about my status just before coming over he had a hissy fit online. I told him to educate himself. I was abused then silence.” “I tell guys again and again to just ignore the hate,” says Tom from beyondpositive. “Block them and move on. They’re not doing it for any other reason than to be an asshole because their own lives are so devoid of love and purpose. But that’s easier said than done, especially for those who are newly diagnosed.” DEMORALISED The negative impact of HIV stigma manifests in many ways. “Now I feel like they are idiots,” says Jay, “but until fairly recently, it left me feeling demoralised and disappointed with myself and the person making such a comment. I internalised a lot of it and felt like I was a second rate person.” “It says more about them than about me. But, candidly, it does keep up the voice in my head that blames myself for it,” says George from London.“I suffer from confidence and esteem issues as it is,” says Chris from Hull, “and it makes me less likely to reach out and meet guys for sex or friendship.” “It is an indescribably horrible feeling,” adds Chris from Norwich. “A churning, negative seething emotion that makes you feel like you are invisible, dead, no-one. Some people make you feel like you shouldn’t exist and that the community is better off without our sort.” KNOCK-ON EFFECT As well as the emotional distress, another concerning side-effect of HIV stigma is that it can stop HIV-positive guys from disclosing their status, or lie and say they are negative. In fact, of the HIV-positive men who completed our survey, 83% admitted that the fear of rejection and stigma has made them reluctant to disclose their status to others. The fear of HIV stigma can also discourage others from testing – which is a particular concern, because a real risk of HIV infection comes not from those who know they are HIV-positive, but from those who have undiagnosed HIV and are therefore not on medication. DIRTY SECRET Why is it that HIV-positive men are seen by some as pariahs of the gay scene, classified as everything from promiscuous sluts to undateables? “It is not talked about enough, and it ends up being a ‘dirty secret’ that people are forced to hide,” says Ian from Bristol, “and HIV-phobic people will use it as an excuse to bully and discriminate.” “It’s sexually transmitted in the main and anything caught sexually is still seen as dirty,” says Simon from Northampton. “It’s probably got no more stigma that gonorrhoea, but the difference is you can’t get rid of HIV. There’s a lot of ‘are you clean? DdF?’ on apps. It’s not just a gay community issue though. Just look how the PrEP campaign has polarised us in the media.” “Look at how cancer patients are viewed and how much sympathy and support they get,” adds Tony from London. “Compare that with HIV-positive folk and the stigma is obvious.” “However it gets dressed up, I don’t think that HIV stigma is acceptable, not today, not any more,” says Tom from beyondpositive. “It baffles me why some people still consider it acceptable to degrade people living with HIV but wouldn’t dream of doing it with people with cervical cancer – another condition which is largely sexually transmitted.” PROJECT FEAR 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. “Ignorance is everywhere,” says Alan from Glasgow, “and where there is ignorance, there is stigma and intolerance of any minority.” “There’s ignorance, fear, lack of understanding that safer sex with an undetectable man is so much safer that unsafe sex with someone who is not 100% sure of their status,” says Rob from Birmingham. “People are extremely uneducated about the virus,” says Tom from London, “and are unaware of how it is spread, how effective treatment is, and how difficult it is for an HIV-positive person to pass it on if they are on treatment.” “I think there needs to be more education about the subject,” adds Dale. “HIV and undetectable status should be a part of sex education in schools. Before I was diagnosed, I was woefully ignorant myself of many aspects of HIV and thought I was going to die young. It’s too much of a taboo subject still and that needs to change. I think there needs to be more educational tools available in clinics and apps and more surveys taken.” MISPLACED This fear is often misplaced, as Matthew from NAM explains: “The chief cause of stigma is fear, but the fear that an HIV-negative gay man has of picking up HIV from someone who is undetectable is misplaced. Progress is slow, but the work that GMFA, NAM, THT and others are doing to educate people is having an impact. We have seen that the message of ‘undetectable = uninfectious’ is slowly breaking through and that will eventually result in a really positive change.” “I think we’re making slow and steady progress in tackling stigma and poor attitudes towards those of us living with HIV,” agrees Tom from beyondpositive. “Undetectability, or Treatment as Prevention (TAsP), has also brought about a change in how those of us living with HIV can manage our sex lives and relationships. I’ve noticed a marked improvement in attitudes on platforms such as Grindr and Recon since the release of the PARTNER study results earlier this year told us that undetectable really does equal uninfectious.” STIGMA CREATES FEAR AND FEAR HURTS US ALL “Do you think the only people who are affected by stigma are HIV-positive people?” Asks Ian Howley, CEO of GMFA. “One of the biggest problems with stigma is the impact it has on gay and bisexual men who don’t test for HIV. We know about 16% of gay and bisexual men who have HIV don’t know they have it. Why? Well some may think they have not put themselves at risk so don’t bother to test for HIV. Some may have taken risks but think they don’t have HIV because they don’t have any symptoms yet. And others think they may have HIV but are too scared to find out, so they don’t test. “Fear is driving these men, who would rather not know, away from testing and potentially from life saving treatment. Getting tested doesn’t change your HIV status. It just makes you aware of what it is. “Undiagnosed gay men are the most infectious. These men account for nearly 80% of new infections. So around 16% of positive men are accounting for 80% of new diagnoses. If there was less fear associated with HIV then it would be easier for people to test. And if people test and find out they are HIV-positive they will be put on medication which will suppress the virus, and eventually they will become undetectable. This means the chance of them passing on HIV to other people is very slim. “So by stigmatising HIV-positive men we are creating barriers that prevent our community from ending HIV transmissions once and for all.” SUPPORT: For more about living with HIV and dealing with stigma, visit www.gmfa.org.uk/livingwithhiv TALK: For details about counselling services that may be available and suitable for your needs, call THT Direct on 0808 802 1221. THIS ARTICLE WAS TAKEN FROM FS ISSUE #156. TO READ MORE FROM THE ISSUE CLICK HERE.