FS Magazine Upfront Famous for being HIV-positive By Kristian Johns @guy_interruptd “Ooh! Look at how many Twitter followers you’ve got! You’re famous!” said a colleague the other week when they found me on there. It’s something I get a lot, and to be honest, it’s something that makes me cringe a bit. Because out of all the reasons someone might want to become famous (I’m not), I can guarantee that “Oh, you’re the HIV guy” isn’t one of the more palatable. Talking about HIV so publicly for so long has certainly put me in the spotlight, and I’m not going to insult anyone’s intelligence by saying ‘poor little me’. The spotlight can burn sometimes, but since it was me who stepped up to the plate, I fully acknowledge that it’s a rock I’ve carved for myself.When I was diagnosed in the early 2000s, there wasn’t really anyone in the public eye I could look to for guidance or advice, so, for lack of a better option, I decided to become that person. As a guy of 23 still finding his own identity, I’ll admit I enjoyed the attention it brought, even found it a little addictive at times, but there’s always been a part of me that’s not comfortable with being ‘the HIV guy’, especially as I get older and far less relatable. However, there’s a much bigger part of me that’s just humbled by the whole experience. Sycophantic as it might sound, it’s humbling that people listen and engage with you on a subject you feel so passionate about. It’s gratifying when people tell you that you’ve helped them in some way and, even though it feels weird at times, it’s genuinely flattering when people seek you out for an opinion, and trust what you have to say. Granted, there’s no off switch. Once you’ve put yourself in that position, you can’t just dip in and out of it like a hobby. Even when I’ve been feeling low, self-absorbed and a little needy myself, if someone reaches out, be they friend or total stranger, I feel it’s my responsibility to be there. And sure, when you stick your head above the parapet, you get a few arrows. Writing columns and being active on social media is a great platform to speak from, but it can also become a shooting gallery. People can be cruel, whether they mean it or not, and those firing arrows at you can range from the bitchy and sarcastic to the flat out unhinged. But all of that pales in comparison to the rewards it brings. To see people who reach out after the shock of an HIV diagnosis growing in confidence, even becoming voices themselves is a brilliant thing to see. The messages of hope can give you goosebumps, like the young guy who contacted me to say he’d chosen a career in HIV medicine after reading FS. It’s incredible to play even a tiny part in creating positive change, whether it’s behind the scenes or out on the front pages. But even though I’m still the ‘HIV guy’ to a lot of people, the ‘front man’ stuff doesn’t really hold the same allure as when I was younger. I had different motivations then, and it was a mutually beneficial arrangement with the people who sought me out. They needed content, I needed self-esteem. These days I feel a lot better about myself, and I’ve done little beyond writing these columns for a while now, and I’ve almost felt guilty I’m not doing more. I had an interesting conversation with my pal Wayne Dhesi of RUcomingout.com. We were on our way to a media awards night, where we’d both received an honourable mention. Don’t get me wrong, it’s nice being invited to parties, especially when you’re being recognised for your work (even if you haven’t done a lot to deserve it recently, in my case anyway), but as a pair of natural introverts, we were shitting ourselves at the thought of trying to hold our own at a big bash full of rather important people. For both of us, it has always felt like a difficult line to walk, creating a name for yourself so you can use it to make people listen. “At what point does the person become bigger than the message?” I asked him. “I don’t want to talk about me. I want to talk about the issues.” “Me too,” he replied. “But people need to put a face to those issues. They need someone they can relate to, otherwise the message just gets lost. It’s just text on a page or a voice in the crowd. You need to build your profile so that people get to know who you are. Only then are they more likely to sit up and pay attention when you say something.” “There are only so many times you can tell your story before it gets boring,” I said. “People need to hear these stories though,” he said. “They need to hear truth, and dare I say it, hope.” Nobody gets into activism and advocacy to become ‘famous’. Nobody does it for thanks or recognition (although it’s nice when it comes). The conversation about HIV isn’t over though. So I’m going to carry on being ‘the HIV guy’ alongside many others, in the hope that one day, HIV becomes ‘unfamous’, and I (and my peers) can shut the fuck up. If we can reach a place where HIV is accepted, normalised and not a great big elephant that we’re too scared to acknowledge. Maybe those in the spotlight find it’s no longer needed, and can go enjoy the sun instead. Kristian Johns is an author and former editor. When he’s not raising awareness of HIV issues, his sole mission in life is to convince his boyfriend to let him have a dog. SEX + HIV Not feeling horny? Losing your sex drive is not uncommon. There are plenty of HIV-positive guys who have felt differently about sex after they were diagnosed, and some that continue to do so. Remember that we all go through periods where we’re not as up for it as usual, and this is only natural. If you’re normally shagging every cute guy in sight but you don’t feel like it at the moment then try not to worry. No one can shag 24/7 forever, however much they’d like to think they could. Remember that you should never feel pressured into anything, and you don’t need to have sex if you don’t feel ready. However, if your lack of sex drive is distressing you there may be reasons for it that can be fixed. There are all sorts of psychological reasons for losing your sex drive that are related to living with HIV, such as guilt or anger about having HIV, receiving an HIV diagnosis, fear about passing HIV on or loss of your self-confidence. There could also be a physical reason; it could be hormonal and to do with decreased testosterone levels. Low testosterone levels can be caused by HIV, especially if it is at a fairly advanced stage, and can also leave you feeling very tired. However, problems with low testosterone levels can be treated with testosterone therapy. Excessive intake of alcohol or recreational drugs can also decrease your desire to have sex, as can some prescribed drugs. In particular, drugs that are prescribed for depression such as Prozac and Seroxat can reduce your desire for sex. If you have any concerns at all, speak to your doctor. Too much sex There’s nothing wrong with having lots of sex, if that’s what you want. Having hot horny sex with loads of guys as often as possible is great if you’re doing it safely and feeling in control at the same time. But if you’re not feeling in control but find you can’t stop, it can have a negative effect on your life. If you’re feeling lonely, unattractive or lacking self-confidence, possibly because of having HIV, sex can for a short time help you to forget these negative feelings and make you feel good about yourself. However, not being in control of the sex you’re having can lead to a reinforcement of any negative feelings you may have. It’s also not uncommon for men who are feeling this way to use more recreational drugs than they really want to at the same time as having more sex than they want. Often men can feel that their drug use and sexual appetite are out of control but can’t see a way out of the situation. Drugs and sex can be used to block out your feelings about having HIV, just as much as they can be an addiction. If you’re unhappy about the amount or kind of sex you are having then taking some time out to speak to a counsellor may help you get back in control of your sex life. SUPPORT For details about counselling services that may be available and suitable for your needs, call THT Direct on 0808 802 1221.