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Feb05

HIV stripped bare: time to expose the stigma

Thursday, 05 February 2015 Written by // Guest Authors - Revolving Door Categories // Dating, Gay Men, Sexual Health, Health, Lifestyle, Living with HIV, Opinion Pieces, Population Specific , Sex and Sexuality , Revolving Door, Guest Authors

From FS Magazine comes an in-depth report on HIV stigma amongst UK gay men – why it exists, how it exists and what we can all do about it. Says FS “a simple change in attitudes within our community can go a long way to overcoming stigma.”

HIV stripped bare: time to expose the stigma

This article by Stuart Haggas @GetStuart first appeared in FS Magazine, a publication of GMFA, here. Republished with permission. 

Photography by Chris Jepson: www.chrisjepson.com @chrisjepson | Venue: G-A-Y at Heaven nightclub

IMMIGRANTS! EUROPEAN BUREAUCRATS! BENEFIT CHEATS! Narrow-minded opinions may make attention-grabbing headlines, but they rarely tell the whole story or tackle the real issue. They can in fact make a situation worse by polarising public opinion and fuelling fear, hate and intolerance.

Britain’s gay community has made groundbreaking progress in terms of acceptance and equality in recent years, but there’s a dark cloud that’s been raining on our parties and parades since the early 1980s. Although we rally together to raise awareness and funds to dissipate that cloud, there are people out there who still shun those individuals who get caught out by the storm.

“In spite of the encouraging strides made by society in recognising and validating the rights of the gay community, the challenges faced by HIV-positive men in Britain today are still considerable,” acknowledges Andre Smith of Positive East. “Despite public education programmes and equal rights legislation, stigmatisation continues to be widespread and can affect many aspects of life.”

“For most HIV-positive men in Britain the problems we face are societal rather than medical,” adds Tom Hayes, editor of beyondpositive. “For example, I was diagnosed three years ago, I’m on treatment and I’m undetectable and stable. Sorted. Unfortunately, as a publicly out and positive gay man, I still face stigma and sometimes abuse when it comes to my HIV status. I’ve been called all sorts of names and heard rumours that would make your toes curl. This can be incredibly damaging.”

STIGMATISED

FS surveyed over 250 HIV-positive gay men about their experiences, and 96% admitted to feeling stigmatised for being HIV-positive. What’s worrying is how many said that other gay men are most culpable, with many believing there’s greater stigma on the gay scene than anywhere else. 82% of those surveyed said they’ve faced stigma on gay dating apps and websites, and 30% in gay pubs and clubs, compared with 18% who’ve faced stigma at work.

“I get more prejudice from gay men than anyone else” says Sam, 29 from Sheffield. “The way I see people talk, no one actually cares about the health element – it’s the stigma of having the virus.”

“We are still pariahs amongst gay men,” agrees Stewart, 46 from Cambridgeshire. “Publicly, gay men support fighting HIV and its stigmas, but one-on-one it’s completely different. Negative guys feel it’s perfectly acceptable to treat you differently, and the poz guy is completely understanding of this. I find it incredibly selfish and insensitive. The moment you say ‘I’m poz’ you see a look you’ll never forget, as well as a sudden change in how they treat you. I’ve had it happen too many times. I refuse to allow myself to be treated like diseased meat any more. I’m much better than that.”

“Mostly from gay men,” agrees Malcolm, 45 from London. “Gay men who won’t touch you with a bargepole for sex, or block you instantly on an app, but will happily shag the next bloke on there that they know NOTHING about. I prefer guys to know I have HIV; I’m more comfortable with them knowing the facts. But that’s quite remarkable, given that the first guy I told – before he came round – got extremely nasty with me and even threatened to report me to the police for not disclosing earlier.”

CLEAN & DIRTY

“People don’t understand how they discriminate,” says JR, 46 from London, “and it’s about the usage of words like ‘HIV-neg only’, ‘clean only’, ‘HIV free you be too’.”

“HIV is associated with ‘being dirty’,” adds Kym, 27 from London. “In chatrooms or apps people refer to HIV-negative being as ‘clean’. It is very inconsiderate towards HIV-positive people.”

“I’m constantly seeing comments like ‘clean only’ on dating sites, which implies positive men are ‘dirty’,” agrees Dale, 25 from Leicester. “Men with HIV are also branded as ‘slags’ by other men in the gay community, even though not all of us slept around prior to contracting it. We’re also shamed for our supposedly risky behaviour.”

“Being looked upon as dirty, diseased, a risk not worth taking, below standard,” says David, 32 from Glasgow. “It’s horrific. I’m no longer judged on me, but on three letters.”

 “Being asked ‘are you clean?’ when chatting to guys. Being ignored or blocked when I have disclosed my status,” says Richard, 44 from Cardiff.

“’Clean’ – the word alone causes animosity amongst the gay community,” agrees Stuart, 42 from London. “I’ve had guys ignore me immediately.”

“The stigma is not just from the heterosexual communities,” confirms Andre Smith of Positive East. “Some HIV-negative gay men feel that HIV-positive men threaten gay communities – in terms of health and in general perceptions of gay men. Such negative attitudes can have a damaging psychological and emotional effect on HIV-positive men when it comes to dating, sex and relationships. The fear of rejection is ever-present.”

UNDATEABLE

Billy is 32 and from Eastbourne. When he was diagnosed HIV-positive he felt that life wasn’t worth living, largely because he felt he’d never have any sort of relationship again. “Having HIV puts guys off even just meeting me. Basically it makes dating impossible as I’m very upfront with it.”

“I find people wanna date,” says Sam, “and when I disclose they say things like ‘I’ve got to look after number one, hope you understand’. As an undetectable guy, I don’t know what more I could do.”

“I’m reluctant to meet new people and have to go through the painful process of telling them,” adds Stuart. “One guy who I was dating was holding my hand when I told him. He immediately withdrew his hand from mine and I said, ‘It’s OK, I’m pretty sure they have proven you can’t get it by holding someone’s hand.’”

“People run a mile, leaving you feeling really not good about yourself,” says Paul, 35 from Manchester. “After four months of seeing someone, he drifted away after I told him. He said it wasn’t a problem at the time, when it clearly was. People generally won’t meet me if they know.”

“It’s so difficult to get over the belief that you’re damaged goods and no-one will want you now,” admits Ben, 30 from Middlesbrough. “I met a guy, he knew about my status beforehand, hooked up, used a condom – and then the next day he regretted it massively: I was a dirty bastard and scum of the earth.”

“I can’t remember the last time I went out on a date,” says Ant, 36 from London. “Potential suitors read those three scary letters on a profile and run away. I’ve been single since I split with the boyfriend I was with when I was diagnosed.”

“I don’t bother to even try to date,” says Jamie, 44 from London. “I’m fed up of being put down by gay men and their stupid opinions about HIV.”

UNTESTED

Not only does stigma impact gay men who are HIV-positive, it also discourages others from testing. “Based on my experience as a sexual health counsellor for gay men, I know for a fact that the stigma around having  HIV discourages many from testing,” explains Positive East’s Andre Smith. “The dominant reasons being a fear of rejection from friends, family, sex partners and wider society. Some of the HIV-positive guys I work with experience considerable anxiety around the ‘disclosure’ issue, which is nearly always founded on a fear of rejection.”

“Myths and misconceptions about what it’s like to live with HIV are still rife, even within the gay community,” adds GMFA’s Matthew Hodson. “Everyone needs to take responsibility for sexual safety. It’s just not going to work if you think that it’s only the responsibility of men living with HIV. For one thing, men who are diagnosed and on treatment are very unlikely to infect their partners. Men who have not been diagnosed, however, will have a much higher viral load, especially if they’ve only just been infected themselves, and are therefore much more likely to pass the virus on to their sexual partners.”

“Knowing your status allows you to make properly informed decisions,” Andre continues. “If an HIV-positive guy is on meds and uses protection with sexual partners, there is no obligation for him to disclose his status if he chooses not to. Likewise, gay men who have not tested but use protection are keeping themselves and their partners safe. The danger and potential for the virus to keep spreading is when both negative and positive guys choose not to use protection.”

TO TELL OR NOT TO TELL

The issue of disclosure is one that challenges many HIV-positive gay men. “It’s hard to tell potential partners: if you do it too soon they get scared, but if you wait too long they feel they’ve been ‘deceived’,” says Brian, 35 from London. “You can get screwed either way, and need to build up a very thick skin to be totally comfortable disclosing it. Sometimes poz-only parties and app hook-ups feel like the only place you can be accepted.”

“There is a constant battle internally about whether to tell somebody or not if you’re dating,” says Dale. “You don’t want to be shunned or rejected, but you don’t want to lie. Sexual partners you may have had in the past suddenly don’t want to touch you any more, despite reassurances that their opinion has not changed. The only success I have had is by dating other people with HIV.”

“I have told others for dating purposes, and none have ended well, so I only go with positive people now,” agrees Sam.

If you find disclosure difficult, and non-disclosure a burden on your conscience, then only dating other HIV-positive men is another solution – but surely a better solution is for us all to tackle the stigma?

ROOT OF THE PROBLEM

“The stigma itself is an attitude, a combination of fear and ignorance, but a powerful one that seems to reach deep into the psyche of society,” says Andre Smith. “If a gay man discloses that he has diabetes, cancer, or a similar life-threatening illness, the response he would likely meet with would be empathic, sympathetic and supportive. It is unlikely that he would unilaterally experience the same response after disclosing his HIV+ status, largely because the global media spotlight has associated being HIV-positive with so many negative and fear-based connotations.”

“Many people take their diagnosis particularly badly, not because they’ve now got a long-term manageable condition, but because they’ve got a stigmatised condition,” agrees beyondpositive’s Tom Hayes. “They’d have few problems telling their friends that they had diabetes or epilepsy, but HIV is something entirely different.”

“Until Ebola came along, HIV was probably the most stigmatised of all infections,” says GMFA’s Matthew Hodson. “Even within the gay community you will hear people blaming others for acquiring HIV, in the way that you would never hear someone talk about a smoker who has cancer, for example. Some of the early, particularly doom-laden HIV prevention campaigns probably contributed to this. But I also think that for some people it’s tied to their own internalised homophobia. Many of us grew up hearing that it was inherently wrong to be gay, and I think some of those negative associations become inextricably linked to the way that we think about HIV.”

“HIV infection is still largely associated with behaviours such as homosexuality, drug addiction, prostitution and promiscuity – all of which are already stigmatised in many societies globally,” adds Andre.

“There are a whole set of judgements that still come as standard with HIV,” says Tom. “These can stop people being able to reach out for support when they need it most.”

BEAT THE STIGMA

While enlightened laws and policies are key in the fight against stigma, the gay community must also turn the spotlight upon itself and address the prejudices that come from within – particularly the attitudes of negative men towards positive men,” Andre Smith explains. “Stigma and discrimination will continue to exist as long as communities have a poor understanding of HIV and AIDS and the suffering caused by negative attitudes both within and outside the gay community.”

“If we are to make real progress in tackling stigma we’re going to need to have more people be open about their HIV status, so we can tackle the ignorance that still surrounds living with HIV,” Matthew Hodson adds. “I believe it’s up to everyone to help make that possible. Don’t gossip, don’t bitch, don’t judge them for it, or pity them or treat them like a china-doll. Ask them why they told you and then work your way forward from there.”

“The tool to help the gay community tackle both the stigma and the rising number of new infections is already with us,” says Tom Hayes. “It’s me, it’s you, it’s your friends. At a time when 1 in 8 gay men on the London gay scene, and 1 in 12 on Birmingham and Manchester’s scenes are HIV-positive, it’s almost certain that everyone knows someone living with HIV – even if they don’t realise it yet. If you’re HIV-positive, find the courage and confidence to talk to your friends and family about HIV. If you’re HIV-negative, don’t be afraid to ask your HIV-positive friends for information and advice.”

“Be honest about it and talk it out,” says Stuart. “Most men who are poz are on meds and are harmless, yet you treat us as if we are responsible for putting you at risk. We want you to stay negative despite the way you treat us. The men that you select because they tell you what you want to hear are your biggest risk.”

“We are still people with feelings and aspirations in life, and there is no need to avoid us,“ says Dale. “We do not want to infect other people, quite the opposite, and we believe in HIV prevention just as much as everyone else. Stigma is hurtful; it’s like being forced back into the closet and dealing with all that pain and torment again.”

STIGMA STRIPPED BARE

One of the main things that came out of the FS survey was the amount of gay men living with HIV who, after they became positive, felt less attractive, undesired, less sexual or looked at themselves in a non-attractive light.

“When I became positive I immediately felt less attractive. I felt ugly and that no-one would want to touch me. This was the hardest thing about becoming positive. Everyone enjoys sex and when your life becomes sexless then it’s a major problem,” says David.

“Self-esteem is a major issue with regards to HIV stigma. If people feel awful about themselves (whether HIV-positive or HIV-negative) then they are less likely to care about their health and the health of others,” says FS editor, Ian Howley.

Ian adds, “HIV is just a virus. It’s the stigma that we associate with it that’s the biggest problem. If you were to develop lung cancer no-one would make you feel bad about smoking. If you were to develop liver disease from drinking too much, no-one would make you feel bad about it. But we seem to, as a community, shame people for becoming positive. This needs to stop. The best way to beat stigma is to educate yourself about HIV. Strip back your fears, your thoughts and get to know the real effect of HIV in our community. Be the solution, not the problem.”

******

FS says: stigma creates fear and fear can hurt us all

Do you think the only people who are affected by stigma are HIV-positive people? Nope. One of the biggest problems with stigma is the effect it has on gay men who don’t test for HIV. About 16% of gay men who have HIV don’t know they have it. Why? Well for many reasons:

 - Some may not think they have 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.

Why is fear a bad thing?

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 stigmas associated with HIV then it would be easier for people to test.

And if people test and find out they are HIV positive then they will be put on medication which will suppress the virus and eventually they will become undetectable. This means the chances of them passing on HIV to other people is very slim.

So by stigmatising HIV-positive men we are creating barriers that prevents our community from ending HIV transmissions once and for all.

Do your bit to end stigma 

Don’t treat HIV-positive men like they are a disease.

If someone tells you they are HIV-positive, the chances are they are undetectable and unlikely to pass on the virus. They will most likely be on medication and many men with HIV look after themselves better than most other guys.

Don’t ask them how they ‘got it’.

The answer is likely to be, “I had sex”. Asking someone how they became positive is stigmatising as it’s making them feel like they are bad for having sex. You wouldn’t ask someone how they got diabetes, so don’t ask how they became positive. Just understand. Ask them why they are telling you. If the person wants to share their story with you, they will. 

*****

Know how hiv is spread

You won’t catch HIV from:

  • Kissing someone who has HIV.
  • Touching someone who has HIV.
  • Hugging someone who has HIV.
  • Talking to someone who has HIV.
  • Smiling at someone who has HIV.
  • Being in the same room as someone who has HIV. 

Do you see where we are going with this?

The best thing you can do is know exactly how HIV is spread and what ‘undetectable’ really means.

For HIV transmission to occur as a result of sex between men, the following need to be the case:

One of the men must have HIV and have a viral load high enough to transmit the virus. If he is undetectable (extremely low viral load) then the chance of him passing on HIV is very small.

The sex must involve body fluids (blood, cum or anal mucus) that contain sufficient quantities of HIV transfered from the positive partner to the negative partner.

The most common way for this to happen is when you fuck without condoms.

*******

Clean up your language

Words can be hurtful and as many of the HIV-positive men in the feature stated, they feel angry, hurt, awful when people use terms like ‘clean’, ‘DDF’ and ‘HIV-free’ on dating apps and the like. So do the following:

  • Drop ‘Are you clean?’
  • Drop ‘Drug and disease free’.
  • Drop ‘HIV free’. 

If you want to mention that you’re HIV-negative, just say that, and include the date you were last tested.

For example: ‘Neg. Tested 28/11/2014’.

A simple change in attitudes within our community can go a long way to overcoming stigma.

This article was taked from issue 145. To read this issue in full select which version you would like:
Pagesuite: click here
Issue: Click here
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