Life Living with hiv Some people have HIV, get over it By FS magazine editor, Ian Howley @IanHowleyIt’s been just over 32 years since the first case of HIV was recognised in the UK. In that time the disease has changed from a near automatic death sentence to a manageable condition, but many people hold attitudes towards HIV, and people living with HIV, that are still rooted in the 80s. Is it time to reassess how we view HIV? FS editor, Ian Howley, considers how his own attitudes to HIV have changed, and why it may be time to say “some people have HIV, get over it”.Before I joined FS magazine I knew very little about HIV. I had never met someone who openly ‘had it’. I came from a small town in the middle of Ireland where my chief concern was trying to hide my sexuality. HIV wasn’t really on the radar. I remember asking my mother when I was very young what AIDS was? She replied, “It’s not something for you to worry about. It mainly happens in other countries”. As I got older I educated myself. I watched the movie ‘Philadelphia’, and boy that scared the shit out of me. When I moved to London in 2010, before I started work for FS magazine, I was flicking through one of the scene magazines and saw a THT advert. “1 in 7 gay guys on the scene has HIV” was the blunt message. To me that was a scary thought. As a relatively naive 26-year-old in a brand new city I wanted to do what a 26-year-old does. However it was my first night out on the scene and, after seeing that advert, I was thinking every guy I fancied might ‘have it’. I started stigmatising people, looking for ‘signs’, really stupid stuff. And what the hell was I afraid of? My mind went back to the movie ‘Philadelphia’. I was associating HIV with death. I didn’t want to die. Coming to work for FS magazine was a huge eye-opener. As a negative guy working for a sexual health magazine it can be quite difficult to understand the feelings, thoughts and lives of people living with HIV. I wasn’t around for the 1980s ‘tombstone’ adverts and I didn’t know anyone who died because of AIDS. To learn just how far the HIV story has come I sat down with Matthew Hodson, Chief Execuitive at GMFA. Back in the 1980s if you were told you were HIV-positive then you probably expected your life to be over pretty quickly. The government’s iceberg and tombstone campaign rolled out in 1987. The message was very clear – HIV infection was a death sentence. If you had HIV you counted your life expectancy in terms of a few years, maybe a decade if you were lucky. It wasn’t unusual to hear stories of people who were diagnosed and then died within a matter of weeks, or even days.Ian: What was the deal if you were HIV-positive back in the 80s? Matthew: Unless someone had visible symptoms of AIDS they were very unlikely to disclose their status. I knew two people who only came out as HIV-positive in their suicide notes. Many men cashed in their savings, sold their life insurance and left their jobs so they could travel the world. Some people probably came to an earlier end because they made the decision to take as much pleasure from their remaining days as possible. Ian: So when did it all change for HIV? Matthew: Improvements in mortality happened rapidly from 1996 onwards, and along with those improvements in the health of people living with HIV. Over time, this led to HIV being less visible on the gay scene, as we were less likely to see people with obvious symptoms of HIV infection or to know people who had been diagnosed with AIDS, and less likely to know people dying as a result of HIV infection. It should not be forgotten that for some the treatment revolution came too late. However many men who had become seriously ill were able to make a significant recovery, often when they had previously lost hope of survival. Ian: Did this lead to a change of attitude towards people living with HIV? Matthew: The shift in attitudes has perhaps been less dramatic than the shift in mortality and illness for people living with HIV. As HIV retreated from view, many people who had lived through the worst of it had difficulties adjusting to the changed outlook. There was a certain amount of ‘them and us’ in the discussions, leading some men who had witnessed the destruction wrought by AIDS in the 80s and 90s to disparage the experiences of the generation that followed. And some of those younger men met this challenge by becoming intensely involved in activism but with a frame of reference that was defined by the earlier, deadlier phase of HIV. Ian: What is the future of HIV prevention? Matthew: There is a need to counter the growing invisibility of HIV, and this requires action from both HIV positive and negative men. As HIV is now a chronic manageable condition, there is a need for greater understanding of the realities of living with HIV in the treatment era. And to promote this understanding there is a need for many more HIV-positive role models. Ian: Positive role models? Like who? Matthew: People like Kristian Johns have been in the forefront of this, but the level of enquiries about his status that he has to deal with illustrates how exceptionally brave he has been in talking about his status. It is easy to stigmatise the unknown. Ian: How do we bring down stigma? Matthew: HIV needs to be more visible again. Not in terms of images of people who are clearly ill, but reflecting how it is for most, although not all, people who are doing well on treatment. We need to challenge some of the outdated perceptions about HIV.These attitudes can be effectively challenged when you know that there are people living with HIV amongst your acquaintances, friends and the people you have sex with, but this depends on people with HIV being brave enough to talk about their status. And whilst disclosure is probably the best tool we have to tackle stigma, the high levels of stigma around HIV continue to prevent men from disclosing, and provide the conditions for stigma to flourish. Ian: Should all positive men disclose their status? Matthew: Gay men, of course, have the right to turn down sexual partners and I don’t struggle to understand why men who believe that they do not have HIV are scared to have sex with men when they disclose. The truth is, though, that as a strategy, avoiding sex with men who disclose their status is ineffective. Ian: Why is this? Matthew: A recent study suggests that more than 80% of HIV transmissions are from men who don’t know they have HIV. So sex with someone who hasn’t disclosed doesn’t mean that they are not living with HIV. It may mean that they’ve chosen not to disclose (and with sexual rejection of men who disclose so common place this is hardly surprising), or it may be that they are unaware that they carry the virus. That’s why it’s important to get yourself tested for HIV. And if someone hasn’t been diagnosed, they won’t be on treatment, and so their viral load will be higher and they will be more infectious to their partners. So the actions that are required to reduce both stigma and new infections are for HIV-positive men to disclose their status, and for HIV-negative men to respond to that disclosure in such a way as to make it more likely that the person will continue to disclose in future. One will lead to the other. Ian: Why should anyone care about remaining negative if being positive is a manageable condition? Matthew: I wouldn’t for a moment suggest that having HIV doesn’t have a huge impact on your life. Most people I know with HIV would say that their diagnosis was a life-changing moment. Although the outlook has improved enormously for people with HIV, it’s still better to remain uninfected. There is no cure. Once you have been infected you will always have HIV, and there’s the potential that you will transmit the virus to your sexual partners. The treatment for HIV only works if you take it. If you have HIV, you have to take drugs every day and if you fail to remember to take them this can have a serious impact on your health. Sexual negotiation becomes that much more complicated – if you disclose your status you may well face rejection, and if you do not disclose you will face vilification. What you can do to fight stigma Tackling HIV-related stigma is one of the hardest things to do. FS editor, Ian Howley, tell us why we need to fight stigma.Some people would have you believe that people need to be scared of HIV and therefore people living with HIV. This is not true. When I came to London, I was naïve, very naïve. Skip forward two years and here I am, the editor of this magazine. I live my life around people, some of whom are positive and some who are not. I don’t see their status, I just see them. Am I scared of HIV and becoming infected? I certainly don’t want to become HIV-positive but HIV doesn’t scare me the way it did back in 2010. Do I want to become infected? Of course not. I want to have a natural child in the future. Becoming positive will dramatically decrease the chances of that. But that’s not the only reason I want to stay negative. I don’t want to have the hassle of going on medication; I don’t want to have to deal with possible side effects; I don’t want to have to give up my time to get my blood taken (I hate needles and they can never find my veins); I don’t want to have that conversation with my family. I don’t want to be positive, simples. But if it happens, then I know that even though I don’t want to go through all that crap, it’ll be OK in the end. Why do I know that? Because I’ve had the pleasure to meet so many men who happen to be positive. They have opened my eyes so much. But if you, like me, don’t want to do any of the above then I firmly suggest you do the following. Protect yourselfBring condoms and lube with you on nights out. And if you forget them, look out for the Freedom packs available at most bars. Don’t assume you’ll be able to predict someone’s status. If you think you can do this, you can’t. You are a fool. Don’t assume that someone will tell you their status The vast majority of positive lads will not want to pass on HIV to you and will do their best to make sure they don’t. But as in all walks of life, there are going to be some people who don’t always take the care that they should. If they struggled to use condoms before they became positive, what makes you think they’re going to suddenly find it easier after they’ve been diagnosed? Plus about one in five gay men with HIV haven’t been diagnosed, don’t know they’re positive and, because they won’t be on treatment, will be more infectious too. 80% of new infections come from people who didn’t know they have HIV. Protect yourself! Test, test, test Know your status. You are more likely to stay negative if you know your status. Even if you say “But I use condoms all the time”. Condoms break and about 2% of HIV transmissions are from oral sex. Also, it can be quite easy to say “Fuck it, I’m probably positive anyway” and put yourself at risk. If you know your status then you can make the right sexual choices for yourself. If you find out you’re positive, well then you can get the help and support needed to lead a happy and healthy life. Drop the fear And finally. Being scared of people with HIV will not keep you negative. It just makes you an ass. Ian Howley, Editor. @IanHowley Useful links: l For sex and sexual health advice and more on HIV prevention visit, www.gmfa.org.uk/sex. l For info on PEP and how it can help you stay negative if you’ve been exposed to HIV within 72 hours, visit: www.gmfa.org.uk/pep. l If you feel you need to talk to someone about being positive, or how to deal with any issues surrounding this feature, visit: www.gmfa.org.uk/counselling. This article was taken from FS magazine issue 132. You can read the magazine in full by clicking here.