How HIV stigma is fragmenting the gay community
- Vilde Kristine Malmo
- Feb 26, 2017
- 5 min read
"HIV is the best thing that happened to me, and my sex life has never been better. Let’s just face it; things get dirtier,” he says enthusiastically about arguably the most feared virus in recent history. Patrick Ettenes contracted HIV from his partner in a scene of callous selfishness.
“Oh, I thought you knew I was HIV-positive,” the lover told Patrick after having unprotected sex with him for months. Patrick effortlessly recalls how these words made him freeze, and how he went into shock. The 33 year-old, grinning from ear to ear, exudes happiness and a striking confidence. His unexpected radiance certainly disproves the myths of HIV-positives portrayed as sick, frail-looking figures with hollowed, empty cheeks.
Today, 12 years after hearing that devastating news, Patrick says, he has gone from a breakdown to a breakthrough. Contracting the disease has changed his life for the better, he says. It has made him an outspoken advocate of testing. He has appeared on the BBC, and is an avid blogger and writer on the subject. Although he is in seemingly high spirits, as his story unravels, it becomes clear that beneath the surface, living with his diagnosis has from time to time been a heavy burden.
"Oh, you're just one of those gays that goes around being a slut and just bareback"
“It took some years to come to terms with my diagnosis,” he says, with what would emerge as a characteristic understatement. The first couple of years following his diagnosis, Patrick fell into a massive downward spiral, using drugs to blot out the diagnosis, and leading an unhealthy life. Reaching a state of acceptance hasn’t been easy, as Patrick faced several obstacles along the way. Some of the most challenging include facing the stigma and discrimination around the diagnosis, much of which has surprisingly come from within his own community.
“Oh, you’re just one of those who just go around being a slut and just bareback basically. That is unfortunately the attitude a lot of gay men have towards HIV-positive men,” Patrick says with a sigh. Today, HIV in the UK is not only a disease of the immune system, but also seemingly one of society- a disease exacerbated by a lack of education. In a research study conducted by Blatant, on the knowledge and attitudes regarding HIV, more than half of the respondents incorrectly believed that HIV can be transmitted via routes like kissing.
Doctor Rashida Ferrand echoes this. She is a specialist physician in HIV Medicine and Sexual Health, and has for the past ten years been conducting extensive research on the topic. She believes that ignorance and particularly the fear of transmission helps fuel HIV stigma. “There is this huge misconception that casual contact is a route of transmission- it is not! Kissing for instance, does not put you at risk of HIV, even French kissing if you want to get more specific,” she says. Dr. Ferrand is not alone in her beliefs. Steve Worall, Deputy Director of the HIV charity, Positive East agrees with Dr. Ferrand’s argument, but extends it further, claiming that the stigma is not purely related to HIV.
“Clearly there is the fear of transmission or ignorance, but I don’t think that is the main factor behind discrimination and stigma. HIV came into light as a disease that was prevalent in groups that had stigma attached to them already, and it’s closely tied up with issues around racism and homophobia,” he says. The outlook for people living with HIV in this country has significantly improved and is dramatically different from what it was twenty years ago, according to Worall. Advances in treatment mean the life expectancy of HIV positive people can be the same as that of the general public. In Patrick’s case, one pill a day keeps his diagnosis in check. And by taking medication over the past 12 years, his viral count is now virtually undetectable, meaning there is no or a very low risk of passing it on.
“HIV is no longer a death sentence. By getting the right treatment, many people with HIV, myself included, lead entirely fulfilling lives,“ Patrick says. And yet the stigma remains, with society seemingly reverting to the bigoted attitudes of the early days of the epidemic. What is more, HIV-related stigma is rampant among young gay men, according to HIV- positive, Alex Sparrowhawk. He has also had to face the stigma.
“The disease itself doesn’t have much of an impact on my life. The difficult bit is how other people relate to us being positive,” he says and looks down. Since getting diagnosed in 2009, Alex now uses his own experience to help others by working for the Terrence Higgins Trust. He has been vocal about his status from the beginning, letting it empower him, but admits it comes at a cost. “There’s an awful lot of slut-shaming out there, and many gay HIV-negative men seem to believe that having HIV means you’re promiscuous, “ he says, adding that the fear and ignorance about HIV particularly takes place online and on gay dating apps, where many uninfected aims to differentiate and distance themselves from those who have HIV.
“A lot is centred around language. You’ll see that on Grindr, HIV-negatives write on their profiles that they are ‘clean’, implying that people who have HIV are dirty, which is ridiculous.” Alex believes that such messages add yet another brick to the viral closet, by demonising HIV-positives and breeding shame. According to findings from ‘England’s Gay Men’s Sex Survey’ conducted and published in 2014 by ‘Stigma Research’, about a third of men living with HIV never disclose their status to casual partners. The same study also shows that more than half of HIV-negative men wouldn’t have sex with a positive man, which could explain why many HIV-positive men choose to keep quiet, or even lie about their health status. Michael, who only wants to be referred to by his first name, is not surprised by these statistics. He runs Positive 21, a support group for HIV-positive, gay men in London. The last couple of years he has noticed an increased demand for the support service, and the fear of potentially being rejected is a frequently discussed topic in the group’s weekly meetings.
“Not disclosing their HIV-status becomes a form of self-protection, and when hearing the group members’ devastating stories I can understand why it seems more comfortable to not disclose their status,” he says. One story in particular comes to mind. Michael tells of a time when one of the members of Positive 21 went on a successful first date with someone. Before the next date, and after contemplating for a few days whether to disclose his status or not, he finally decided to be open about it.
“He was met with an outrageous reaction. His date was mortified and horrified to the extent that he started publicly shouting and calling him a murderer, ” Michael says shaking his head in disbelief. Michael adds that this is a sort of story he hears frequently, which he believes indicates that the issue of stigmatisation is in some ways going backwards.
“When the HIV epidemic came to light 30 years ago, gay men supported each other, and I’m sad to say that it now seems like the stigma is rising in the gay community.” Patrick is quick to agree with Michael. In his own case, his confidence helped him tackle a lot of this HIV-related stigma, and disclosing his HIV status to potential sexual partners has largely been okay. However, he still encounters widespread ignorance and believes the lack of education will continue to perpetuate the stigma. He is therefore determined to use his media-voice to put the issues related to HIV on the agenda, and is even planning to one day publish a book on the subject.
“We discuss cancer every single day of the year, but how often do we talk about HIV? On World’s Aids Day. We need to change that,” he says triumphantly and smiles, his thoughts clearly planted in plans for World Aids Day.
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