Me, My Life And HIV

Ahead of World AIDS Day on Sunday 1st December, QX decided to find out more about a selection of men living with HIV in London’s gay community today. Speaking about diagnosis, testing, unprotected sex, stigma, HIV education/awareness and disclosure, these six interviewees tell us from as many angles as possible how they have lived, and how they currently view their life with HIV. 

By Patrick Cash

Maximus Overlord Crown, DJ, 24

I had no idea that I had it, I went for a test in September 2011 and then I kept on missing these calls from the clinic, and I thought it couldn’t be anything too big, but then eventually I picked up a call and they were like ‘you need to come in.’ I was eventually diagnosed on the 10th December.

I felt numb initially. And then it was the next day that I spent the whole day in bed crying. I didn’t want to get up. It’s been two years now, and I still don’t think that’s quite enough time to fully come to terms with your diagnosis, but you know it gets easier by the day.

I’m not yet on medication because my viral load and CD4 counts are quite robust. In terms of telling my friends, I didn’t actually tell most of them myself – I was booked to DJ at a club in April 2012 and I’d just had a falling out with a former best friend at that time. They went on the Facebook group and started posting about me having HIV. Considering 3 or 4,000 people were invited to that event, pretty much everyone knew.

But on the other side, I got only messages of love and support from my friends after that happened.

I haven’t experienced any HIV-phobia first hand to my face, I don’t know what people are saying about me behind my back! And there’s only been one guy I liked who backed away when he found out I was positive. I can’t blame him for that because I kinda understand it; even though he can accept that HIV doesn’t change me as a person, he didn’t want to take that risk, however small it may be. However, I do think a lack of education and awareness about HIV, not just in the gay community, but in the wider world, might contribute to this thinking.

However, it wasn’t a lack of education that contributed to me getting it. I wasn’t having lots of unprotected sex, it was a one-off and a silly mistake. Whether he knew he had HIV or not doesn’t matter to me, it can’t change anything now, it’s about moving forward. At the end of the day it is a Russian Roulette: you could sleep with 1,000 people and not pick up HIV, or you can sleep with one person and get it.

It has given me a new take on life in a way, I just think that as a DJ I have a duty to lift people up and it’s about moving forward, you know.

 

‘Matt’ Bartender, 20

I was diagnosed late September.

I had a really bad sero-conversion – which is the beginning stages of
it – so I was ill for about three weeks and I was admitted to hospital for four days. Even the doctor didn’t know what was going on; I hadn’t eaten, I’d lost about three stone, being sick. Before that I was going to the doctor’s every day, saying ‘I’ve never been this ill, I visibily look like death’, and they just sent me away. One of them said I had vertigo.

Had my step-mum not disputed it and demanded a blood test, they would have dismissed me again, but after they took the blood test the doctor who was going to send me away apologised so much. My liver was on the brink of collapsing, I was totally screwed. I had to be put on a drip for energy and water.

Four days down the line they said you can go home. They said they didn’t know what it was, it was an acute viral illness. Two days later we went back and they said the results had come back inconclusive, that I might have HIV. I was in total shock.

You don’t believe it. You just brush it under the carpet, it’s too big. Too big to cope with. In terms of just coming out of uni and looking for what career you want to go into, and dealing with what medication you’re going to be on for the rest of your life and coming to terms with an illness that’s never going to go away, it’s too much to deal with.

I’m quite lucky with the medication, usually you have severe side effects but – fingers crossed – I’ve had nothing, and it’s been about three weeks now, and usually the main side effects kick in within a week. I started the medication now because of sero-conversion. The more ill you are, the better your outcome is, because your body can fight it better.

I have no sympathy for anyone having unprotected sex. I have no sympathy for myself. Good luck, because you’re asking for it.

My family are really bad dealing with it because they’re so emotional. They’re constantly crying and because my family are so weak, I’m a lot stronger. Particularly over the last few weeks, I’ve just got really cold, that’s the only way I can describe it. It’s not me consciously doing it, it’s also subconscious, the bigger the issue the more I’ll close it up. If something’s a shock to your body, then you’ll try and hide it away.

I was having unsafe sex. I didn’t really do one-night stands, but I did do online dating and with gay people, particularly when you first come out, you feel like you want a boyfriend. And then you’re on this mad search for a boyfriend and it never works, so you break up with one person and you’re upset so you jump on to the next person because you never want to be single. And then before you know it, you’ve got a line of men that you’ve been with, and it’s like “shit, what have I done?” And then bang, it’s too late.

I haven’t told many people. I think people look down on people with HIV so I don’t want anyone feeling that I’m a weak person or any less of a person than I was before, so I’ve told my immediate, best friends and I’ve not told anyone else.

I have no sympathy for anyone having unprotected sex. I have no sympathy for myself. Good luck, because you’re asking for it. But if you get diagnosed: deal with it how you want to deal with it. There’s nothing worse than trying to deal with something and having people telling you that way is wrong.

 

‘Elliot’, 20

I was diagnosed on the 1st October, 2013. I really didn’t expect it. I know how I got it, I was having unprotected sex and I didn’t care. I just thought if anything would happen I would get something curable like Chlamydia or something. I never thought I would have HIV.

Usually these bad things happen to other people, a neighbour or someone across the street. You just never think it will happen to you. I trusted people too much as well, if I asked them if they were clean and they said ‘yeah’, I would ask some more questions but that would be it.

Before my partner and I met I was abroad in a different country and I think that’s where I got it from, because I wasn’t careful. I was testing every three months, but I would go to my doctor and tell him I wanted to get checked for sexual things. I wouldn’t go to a sexual health clinic because I didn’t think I was the kind of person who would have these things.

I think there needs to be more education about sexual health and HIV. When I was in school I didn’t actually get taught about HIV. They taught us about AIDS, but they didn’t say anything about HIV or gay men or gay women, it’s always two straight people. I didn’t know anything about HIV until I got it, but then I read up more about it and I learned more about it.

I’ve told a few close friends who I look at as family, because I trust them and I know they won’t say anything, and I’ve told my family, apart from my Dad. My Mum cried, some of my friends cried, but they were all supportive.

I haven’t encountered any stigma yet because I was only recently diagnosed. I don’t really want anybody to know to be honest, only the people who love and care about me and vice versa because I know they won’t judge me like that. I’ve warned them just to be more careful with themselves. It’s taught me you really should help your friends sometimes as well, you should open their eyes before something like that hits. Because I say to them look what’s happened to me: it’s not the neighbour this time, it’s one of your best friends.

 

Paul Fleming, Positive East Worker 

I was a bit frightened when I was diagnosed as to what people may think and say, and what happens next. It took me about six years to tell family. Some friends I told straight away, others it took more time, I still haven’t directly told all of them. I came to Positive East to get a lot of support, and they were brilliant. I got some counselling, housing advice because I was homeless at the time, and a hardship grant from the Crusaid fund.

I did a diagnosis course which was really useful to get my head around what had happened. My self-esteem was still quite low so they encouraged me to do some volunteering, and that helped me put my life back together and get back on my feet. Providing you’re diagnosed at a reasonable time before you get sick, the rest of your life is as long as it would have been otherwise.

I was lucky, my immune system is very robust and I managed for nearly ten years without starting medication which is very unusual. I started meds just over eighteen months ago, it works perfectly well, I don’t have any side effects and I take three pills a day. Apart from that you wouldn’t know.

I’m not going to have bareback sex with someone who doesn’t know what their HIV status is, or tells me that they’re HIV negative. However, if we’re having sex and an accident happens I don’t feel pressured. I know what to do, which is to get them to A&E and they can get PEP straight away.

The only people who have discriminated against me have been other gay men, other gay men who have preferred not to have sex with me. They prefer to have sex with someone who doesn’t know their status rather than someone who is positive, which I find bizarre. It’s just ignorance.

The expression ‘are you clean?’ is a disgusting expression. Clean? Clean from what? If someone’s written on their online profile ‘only looking for clean guys’ then I’m just not interested, I’m not even going to go there. I can’t be arsed to try and educate people. I have tried in the past, but not really got anywhere.

In a bizarre way in the past eleven years though, it’s been more positive than negative. I’ve changed my career, refocused my energies, I’m much gentler, I’m much kinder, I’m much more conscious of the little things in life that we probably pass and don’t even notice and take for granted each day. It’s almost kind of being blessed by being mindful of mortality.

Although I wouldn’t wish it on anyone, and it’s not a career choice!

 

Shane Valentine, 27

I went to get my results and I was left sat there for like ten/fifteen minutes. The longer time went on I started to get a bit more anxious and then this guy called me in and blurted it out: ‘Your HIV test has come back positive.’ Everything around me went quiet and I started to cry. I felt like I couldn’t breathe. I was thinking all these different things: how am I going to tell this guy that I’m seeing? Is Mum going to be really disappointed in me? How am I ever going to date again?

I wasn’t having much unprotected sex, it’s the perils of Grindr. I got chatting to this guy and I went round to his, we had a bottle of wine and one thing lead to another… We had unprotected sex and I was a little bit under the influence, but we’d had the conversation before, and he said he was negative and he’d been testing recently and I had been tested recently, so I didn’t really think too much of it.

I decided to go on to treatment probably about four months after I was diagnosed, even though I wasn’t on the frontline of needing to take medication. It was just something I felt I needed to do in order to take control. Whilst this virus is swimming about in your body and multiplying and doing whatnot, it just makes you feel really dirty. So, mentally I thought if I’m on medication and it suppresses it, then I’m in control.

Obviously, as I hadn’t been sleeping around I knew exactly where it came from. And it was a weird feeling because instead of feeling angry, I kind of felt sorry for him. I contacted him and told him I’d been tested positive and he should go and get tested. He was a bit shirty to start off with but then he went, and got a positive result. Then, not only was he coming to terms with being diagnosed, he was coming to terms with the fact that he’d given it to someone else.

I was naïve about HIV before I was diagnosed. I’d only come across one person who had HIV when I was twenty or twenty-one, and it kind of freaked me out. I couldn’t imagine taking it further. I guess there is stigma, but I’ve been relatively lucky myself. The only really negative response I’ve had is a guy I used to know came up to me in a bar and said “I’ve heard something really horrible about you, that you’ve got HIV” and I said “Yeah, I have” and he just turned his back on me and walked away.

Nothing I can say or anyone else can say is going to stop people having unprotected sex, I know that. But for me the biggest thing is ‘know your status’. Go and get tested regularly and make sure that you’re aware. The guy that I got it from didn’t know he had it, and things may be different for me had he been tested. How would you feel if you gave it to someone unknowingly?

 

Eric, 42 Positive East Gay Men’s Worker 

I was diagnosed twenty-something years ago. About 1994. I was quite ill, I was getting very big bruises everywhere, on my leg and then on my side and my father’s a doctor so I went to see him and he said ‘this is normally something that pregnant women get or elderly people’ and so I went to the Royal Free and I got tested. I was admitted to hospital the next day.

I was quite surprised but I wasn’t shocked. I’d been having a lot of unsafe sex – for probably all my life beforehand. I preferred it. I had to go to hospital every three months to stay for a week. I must have had a really high viral load, and obviously in those days there were no machines to measure that, but my CD4 count was like 28, and I had non-existent platelets. Platelets make the blood clot so that it doesn’t bleed through the veins. I had about 3 and what would be acceptable would be something like 120-180.

I was scared. I got scared when people died around me. Like I was in hospital and I’d wake up and a couple of people who I’d spoken to the day before had died. When the drugs came through I was put on loads of tablets. In those days there were people taking about sixty tablets a day, and not only that, but they made you really sick as well, the side effects were awful. Diarrhea, lethargy, making you feel rubbish.

I never had pneumonia or anything like that, though. I think a lot of it was psychosomatic, and I wasn’t going to be beaten by anything. And I think if you sit around doing bloody nothing, despairing about what your life is going to be, perhaps your brain has this ability to make you worse. But there was definitely an improvement with the drugs, there was an improvement in my skin colour, and I had more energy.

I have a certain way of disclosing my status online. I’ll ask people “What’s your status” and they’ll say “Whatever” or “I’m negative” and then I’ll say “Oh, I’m positive.” And in a way I’m not ashamed of it, and actually it’s made me a better person and look at things in a totally different way. If someone’s got issues with it then I don’t think I can be bothered.

Years ago people would just go “If you don’t mind, I’ll pass”, but there have been some who have been quite interested in how I felt. The gay community is its own worst enemy in terms of HIV stigma. The industry that’s been created amongst the gay community is very bad at promoting HIV awareness, there’s hardly anything apart from THT and ourselves. But also it’s a very good way of getting rid of people you don’t want to talk to.

I wouldn’t like anyone to go through what I went through, because it was hard and sometimes it was really lonely.

 

• World AIDS Day is on Sunday 1st December

• Positive East is at 159 Mile End Road, Stepney Green, E1 4AQ

• To join in their WAD 5k run go to positiveeast.org.uk

Advertisement

9 COMMENTS

  1. I don’t think the men profiled above are whining or asking for sympathy. To me they are giving us the benefit of their experience and perhaps by sharing they will prevent others from taking the risks they take. What purpose does it serve to judge them?

  2. Those criticising Michael need to help me a bit… I can’t see the difference between drink-driving and barebacking, except that if you drink drive and crash your car then you’re an idiot, if you bareback and get HIV you expect people to feel sorry for you. I have friends who caught it, one got it from her boyfriend 20 odd years ago when a condom broke and her boyfriend gave it to her (he didn’t know he had it either, only found out later), the rest of them got it because they were reckless. I don’t break friendships because of somebody’s status. There are cases of bad luck, and it’s horrible, but very rare. Barebacking is always a choice (and no, Shane Valentine, don’t use a bottle of wine as an excuse to bareback!).

    I suggest everybody who reads this stops drink-driving/barebacking since there can be serious consequences and no, there are no excuses!. If you don’t have a condom handy, wank each other off this one time, if you drank too much then walk or get a cab.

  3. Thank you for lecturing us, we should all learn from you and from your safe sexual life.
    You probably do not know (otherwise you would not write such things) that there are many more sexual transmitted diseases that are not curable and that you can get regardless of your safe habits. So before writing offensive comments, make sure you know what you are talking about.
    We all know HIV prescriptions are expensive, what about those with cancer? Their prescriptions are as well expensive, but you do not blame them because people who got cancer were not reckless and irresponsible. I wonder how you would feel if you got any disease whose treatments cost more than you can afford and somebody came to you with the bill.
    “HIV+ but healthy” means that they can lead a normal life as their viral load is low, so again, read more before typing insulting sentences.

    Finally, you blame people for having bareback sex but you do not spend a single word on promiscuity. How about everyone trying to raise awareness on the risks of a promiscuous behaviour? It would save many people from getting ANY std.

    Not everyone is so lucky to get healthy to their 50s. It is always easy to speak when you are inside your comfort zone. If you do not agree with what has been said by these young men who saw their lives changed forever, please keep your thoughts to you. At least you would show a little bit of respect for what they are going through.

  4. Michael – I’m assuming you’re perfect? That you have never made a mistake in your life?

    How wonderful it must be to be you!

    I’m not HIV+ myself but what I get from the above stories is:

    A – Positive reinforcement to others who may have been thinking about having unsafe sex but will now think twice about doing it when it comes time to whipping it out.

    B – Hope for those who have been recently diagnosed, that their life can continue – albeit with some potential challenges ahead.

    Rant over x

  5. Dear “Michael”,

    I would just like say how great it is to hear you have never made a mistake or experienced a moment of poor judgement in your life.

    If only we could all be a little more like you we could probably shut down the NHS in a few years.

    Rgds
    Joe

  6. BTW..Michael BBing and HIV/Aids started in your ERA. I think you don’t have a clue, a bit of respect would go along way, and i hope in the future your not in a similar situation, and don’t need medical treatment. It’s people like you and your comments that not only cause stigma in HIV/Aids, but also homophobia. If you know anything about life or you gonna be negitve then keep your comments to yourself.

  7. Another WAD and another one-sided stories from HIV positive men whinging about stigma.

    Let’s go back to the basics….

    You all have had an unprotected sex being it once or multiple times. Despite knowing how HIV is spread, you have chosen not to protect yourselves and naturally you got what you have asked for… an incurable disease called HIV. None of you got it through rape, infected blood transfusion, a cheating boyfriend nor you were born with the virus. You got it because you were simply, knowingly reckless and irresponsible! It was your informed choice not to use condoms. So why the whinge now? If you were a man enough to BB, be a man enough to bite the bullet and face the consequences! Its nobody else’s fault but yours!

    Do you feel you deserve any respect?

    I’m in my 50s. I always have had and I always will keep on having safe sex. I have been face to face with rejections and insults by positive BB gay men on multiple occasions. Reason? I have put a condom on to protect myself and them.
    I have my sexual fantasies I can’t fulfil, I’m bombarded with promotions of BB sex being it from websites, porn or sex clubs… I get no financial reward for being safe… I get no support nor encouragement to keep on being safe from any charity nor support group! My life and my sex life would have been much easier and much more pleasurable if I have given in, barebacked and got HIV! Yet, I DO BOTHER with condoms despite I don’t like them!

    So who deserves respect?

    Interestingly but not surprisingly all of you talk about what HIV positive status means to you. However telling your friend and family and disclosing it to your potential sex partners should be the least worry! I wonder how many, if any, of you know how much your recklessness is costing the NHS. HIV is not a free disease! It’s costing the NHS millions to keep you alive. Smokers at least contribute £10 billions a year through tobacco taxes… how do you contribute? The taxes you pay hardly cover the cost of your treatment not let alone you contribute anyhow to the society. And with new HIV cases historically high and rising, I’d worry more about who will pay to keep you alive in 10, 20, 30 years time because the NHS budges is not bottomless.

    So again, I ask, what have you done, achieved, contributed anyhow (?) to deserve any respect?

    What have you done about the BB culture? What have you done about the promotion of BB sex? At the end of the day, It is in your own interest to keep new HIV infections at minimum. None of you mentioned the importance of using condoms at all times. Instead all of you go on about is testing, testing, testing… yet you are the living proof, testing is not the answer. You didn’t get HIV because you did’t get tested, but because you didn’t bother to use a condom!

    Oh and finally about the word ‘Clean’. Perhaps you would prefer to be asked if you are ‘Disease Free’?
    How about the word BareBack? Isn’t that a sugar-coated word for reckless, irresponsible, no-selfrespecting way of having sex?
    How about those HIV Positive men who write in their profiles “HIV+ but healthy”? Are those with incurable chronic disease really healthy? Or just ‘in good health’?

    There are two sides to each coin. Unfortunately, as always, we only hear/read one sided stories. Those of HIV positive men who got HIV through their own fault, who were reckless, irresponsible, who simply failed to protect themselves from a disease that is 100% avoidable, costing NHS dearly and yet they keep on barebacking!

    So stop whinging about stigma and do something worthwhile! Stoping barebacking (Paul Fleming!) and starting encouraging all of us to be safe at all times would be a good start!

LEAVE A REPLY

Please enter your comment!
Please enter your name here