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Why we should never stop being scared of AIDS

with 27 comments

Image: AIDS awareness poster

The "Don't Die of Ignorance" campaign of the 1980s

As an HIV/AIDS activist, one of the questions I wrestle with daily is this:

At what point does educating people about HIV start to dilute the fear of the virus itself?

Sorry to get all controversial on you, but bareback sex feels good — that’s why people do it.

It’s no good brushing it under the carpet in the hope that people will conveniently forget this small point, because it’s a simple fact of life; your dick is packed with nerves that respond favourably to something warm and wet. And no, I don’t mean apple pie.

Well, I’ll tell you what doesn’t feel good: The fact that I couldn’t snog the face off of my gorgeous, HIV negative (now ex) boyfriend when we went to bed at night, because there was usually blood in the sink after I spat my toothpaste out. Nope, that’s pretty depressing, actually.

Or what about the fact that I can’t drink alcohol any more because of the damage the years of medication has done to my liver? Tonic water, anyone? Just me? Oh, okay then.

I’ll tell you what else doesn’t feel good: that despite still being relatively young and in my prime (I’m 31), I’m usually so exhausted by the end of the week that I sleep for half of Saturday and tend not to move past the sofa for the rest of it.

And did I ever tell you about how I got this scar on the side of my face? No? Well that was from last November, when I changed my medication, had a massive allergic reaction to it and was found hours away from a coma at the bottom of my stairs by my mother, who came round to check I was OK after nobody had heard from me for four days.

This, ladies and gents, is the reality of HIV.

In July 2008, I wrote for the Pride Blog, and I talked about HIV and the “Tombstone Generation”. For people like me, growing up in the 1980s, HIV/AIDS was without a doubt regarded as a killer. We were bombarded with images of falling tombstones and icebergs, and ominous voices telling us: “don’t die of ignorance.”

Before this period, the message was even closer to home. Paul Burston, author of “The Gay Divorcee” recently told PinkNews: “”For those of us who are 40-plus…we didn’t need ‘icebergs’, we saw friends die in hospital.”

I guess if you were sexually active in the 80s, going to a funeral every week in the 90s would have put the whole barebacking issue into perspective.

Fast forward to 2010 and things have changed dramatically. Take me for instance. I have a great job, I earn a good salary. I don’t live on benefits. My boss is very understanding about taking time off for hospital appointments, and treating the virus means simply taking five pills in the morning. It’s just become a part of my daily routine, like putting my contact lenses in so I can see properly.

Yes, HIV is now very much a ‘manageable condition’ — rather like diabetes.

In the developed world at least, we’re so fortunate to have treatment and care available to us, and I can’t put into words the respect and gratitude I have for the men and women who dedicate their lives to finding new treatments, vaccines, and hopefully one day — a cure.

But with all these advances in medical science, we’ve ended up with AIDS no longer being the killer it used to be. So it’s only natural we worry about it less.

It’s also invisible — you can’t see it, so it becomes easier to bury your head in the sand and forget about it, as opposed to, say, a dirty great weeping sore on the end of your cock.

It feels like lately, AIDS awareness campaigns have taken a very softly-softly approach, concentrating on a gentle “use a condom” message.

This is all well and good, but what about showing people the harsh realities of HIV? The anti-smoking lobbyists have got it right, with a slew of increasingly more graphic ad campaigns, and images of rotting teeth and blackened lungs gracing every fag packet.

Should we take our lead from the anti-smoking groups and start including similar on the DVD cases of bareback porn? Or would that ruin our fun too much? I mean, who wants to think about AIDS when you whack a porno on in the background while you’re sticking it to/getting banged senseless by some cute guy who thinks you’re hotter than molten lava?

If you were around in the mid 90s, you’ll vividly remember the image of Leah Betts in her hospital bed, which was circulated to the press in 1995. Her mother released the photo in the hope that people would see it and think twice about taking Ecstasy.

What would make you think twice about barebacking? An advert asking you very nicely to use a condom, thank-you-very-much, or being slapped round the face with the image of someone in the last hours of their painful life, covered in KS lesions, getting water through a drip and pissing it from a catheter?

Now ask yourself this: Is a few seconds spent having a giddy, bareback orgasm worth that?

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Written by guy_interrupted

June 26, 2010 at 11:21 am

27 Responses

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  1. brilliant blog.

    As a straight female I spend very little time considering how HIV affects me, which of course is stupid and senseless, because it’s not just a gay or male disease.

    Thank you for your honesty and for being willing to throw the horrid dirty reality at us, to get us all to think twice.

    Tammy

    June 26, 2010 at 11:37 am

  2. Also think of the parents who have to be told that their child has this dreadful disease and knowing that there is nothing you can do to help them, other than give them your complete love and support and hope that one day there will be a cure and that you don’t have to live in fear of losing your child, because no matter how much we want to believe that they will outlive us, there is always that fear that they won’t.

    Love you mum xxx

    Mum

    June 26, 2010 at 12:28 pm

  3. As a fellow +ve person I agree with a lot of your points, however campaigns based on fear of the virus can have a very negative impact on a person who is newly diagnosed. I contracted HIV from my ex who I believed when he told me he had recently tested negative, as I had at the time. It turns out he hadn’t tested negative as recently as he said he had. Campaigns also need to focus on positive messages for those trying to live positively as a +ve person rather than fill them with fear

    J

    June 26, 2010 at 12:35 pm

    • I just cant agree more, bang the message home hard. (excused the pun) I know far too many people who do not know enough about HIV and AIDS and really don’t know all the ways to catch HIV. People are dropping like fly’s with HIV and we have to stop it ASAP ! Are you really telling my that if Softly Softly works………….. Give me a good example when the UK has taken a Softly Softly approach and it has worked ????????? People (everyone) only stand up and listed if you bang this type of message home HARD ! This is not a fairy tail this is real life and people are dying. I listen to all my friends saying that life on medication is better but life without HIV is AMAZING ! What we need if for people to tell the truth and STOP covering up HIV and people need to be open about sexual practices. Information = Power to make your own decisions.

      Jonathan

      September 28, 2010 at 11:28 am

  4. In reply to J. I believe my sons blog was intented to raise the awareness of HIV/AIDS and it’s consequences in the hope of preventing others contracting this disease. It was not mean’t to distress those that have already been diagnosed, but you yourself have shown how easy it is to contract it by putting your trust in the word of another.

    My sons attitude to this disease is that “it has to live with him” and not “he has to live with it” and by doing this he has a very positive outlook on life and spends a lot of his freetime raising awareness.
    His tablets are not his enemy but his friends who are living alongside him in life.

    Many parents have my fear for their children, my niece is 34 and has cancer and I am sure her mother has the same fears as me.

    Get out there and look this disease in the face, live your life to the full and spread the word to raise awareness that no one can be too careful.

    I wish you well.

    Mum

    June 26, 2010 at 5:40 pm

  5. Thank you Kristian’s mum for your well wishes. My comments were intended as an alternative perspective based on my experience, so I genuinley hope you interpreted them as such rather than considered them to be critical of anything your son said.

    My comments just refer to the gay press as that is what I have been most exposed to both before and after contracting the virus. Whilst I agree ‘shock’ tactics serve a purpose, such campaigns of fear would not have prevented me contracting HIV because I genuinely believed I was not at risk from my partner. He is a medical professional so I completely believed him when he said he was negative. Such shock campaigns just filled me with fear at a time when I was very vulnerable as I was in a place where I was much more conscious of HIV campaigns than your average person reading the gay press. This was years ago so things are very different for me now.

    There is no single right or wrong way to deal with raising awareness, as the publications HIV negative gay men read and rely on to educate them are also the same magazines HIV+ gay men are exposed to. It’s a very difficult situation, how can you make negative men aware of the full implications of their actions and the virus, whilst at the same time inspiring +ve men and helping them realise they can lead a long a healthy life?

    As I say, there is no single right or wrong approach but thank you for contributing to a debate that I find very important, difficult and interesting. It’s especially nice to have the opinion of a parent as parents are often not aware of their child’s status or well informed about the virus so it’s good to hear your views. Thank you

    J

    June 27, 2010 at 9:36 am

  6. Thank you J for replying and no, I did not in any way see your message as a criticism of my son’s blog and I didn’t intend it to come across that I was defending him, he is more than capable of doing that himself!.

    I felt on reading your message that you were newly diagnosed and maybe hadn’t totally come to terms with what the future held for you, so I was, as a parent of son who is HIV positive only trying to reassure you that you can get on with life and along the way use your experiences to inform others that this disease is preventable.

    I have made it my business to learn as much of this disease as possible, I have scoured the internet, read leaflets that my son has given me and also been with him to speak to his specialist. It has given me a greater understanding of what life holds for him. I would advise all parents to do the same, it doesn’t take away all the fears, but it does put everything in perspective.

    I sincerely wish you well and thank you again for replying.

    Mum

    June 27, 2010 at 11:40 am

  7. First off, you are very lucky to have such a good relationship with your mum and it’s really refreshing to hear that she is so supportive.

    To me the issue here is visibility. HIV is not only invisible in terms of symptoms like you say in your blog post but to many it’s invisible to socially too.

    When I moved to London 6 years ago I didn’t know one single person with HIV. A good friend was diagnosed about 3.5 years ago and it was a real eye opener.

    As soon as I heard about my friend’s diagnosis I undertook it to learn as much as I could about the disease. I have to admit that before my friend was diagnosed I probably would never have considered having a relationship with someone with HIV or known much about what treatments are available or how it affects your daily life. But having educated myself about the finer details of living with the disease it really did help when a short while later I met a wonderful HIV positive man (who I’m now engaged to after 3 happy years together).

    We have a great safe sex life and while sometimes the urge is there to have spontaneous unprotected sex it’s just not an option and it never will be.

    He’s lucky in that he’s been positive for over 5 years now but due to a good diet, regular exercise and moderation in terms of alcohol coupled with a good immune system, he hasn’t had to take any medication (and hopefully won’t for a long long time).

    He’s not told his parents because he doesn’t want to cause them to worry in the way your mother spoke about and I can appreciate that.

    The downside to this though is that once again the disease becomes invisible. It does concern me that at some point in the future taking that medication is going to become part of the daily routine of our lives. It’s only when it becomes visible that you truly realise how tough it can be.

    Scarily in the 3 years we’ve been together I’ve had two more friends be diagnosed with HIV and yet another two who have taken courses of PEP.

    All four are educated to degree level or beyond so it’s clearly not an education thing. The two that have taken PEP have seen what it can be like to have to take strong medication every day and have now, thankfully, learnt their lesson.

    The challenge as I see it is to make HIV visible in our society in such a way that doesn’t stigmatise those who have the disease. I don’t have an answer but raising the issue for discussion like you have on your blog can only help in finding one.

    I’m sorry if I’ve rambled a bit, I hope I’ve made some sense.

    S

    PS You may have seen it before but a friend of mine also writes a blog about HIV, you should check it out when you have the time. http://edwinjbernard.com/

    Stephen

    June 27, 2010 at 11:57 pm

  8. A very brave and moving post.

    Trevor

    June 28, 2010 at 12:33 pm

  9. I am of that generation you mentioned, and I’m tired.

    I’m tired because I seroconverted almost twenty years ago now, and while I have been amazingly lucky with my ‘health’ over those years, I had to watch so many people fade away and die. I’m tired of the amount of funerals I’ve attended, tired of losing dear friends, tired of grieving for my partner who was cruelly taken away just months after being diagnosed.

    I’m tired of all the little things (like the teeth brushing you mentioned), tired of worrying if there will be a toilet, tired of hospital and doctors appointments, tired of the drugs and how they make me feel, tired that I don’t live anything close to a normal life, and tired of being old before my time.

    But what I’m most tired of is watching people from younger generations just sweep it all under the carpet. All that campaigning we did, the scary adverts we almost forced to government to make, the fund raising, the voluntary work, the talks, the pleading with people to be safe; the telling, and re-telling of my story, hoping it would make a difference.

    Last week I found out that a friend aged 24 has tested positive, after several years of playing unsafe because he believed that you just take a pill and everything will be ok. Just months in and he’s now completely, and painfully, aware that that this is just not the case – and this is what people need educating about, and yes, in answer to the question you posed, we should be scaring people, because it is scary.

    There’s been a trend over the last decade for what I’ll loosely call ‘sleaze’, and the ultimate badge of honour for some people involved with the sleaze world, is to be diagnosed as HIV+ – it’s almost a must have amongst certain people, a special club for the ultimate sleaze.

    Meanwhile, lucky people like you, me and them get treatment, while so many people in undeveloped worlds are suffering, and dying in the most appalling conditions. We don’t have the excuses they do; we live in a relatively enlightened society that doesn’t continue mad myths about how and why one might contract HIV, condoms are, by most, not considered evil, and within the so-called gay community, we are showered with free condoms like confetti.

    Yet still, people like my 24 year old friend are playing with fire in the belief that running the ‘burn’ under a cold tap will fix everything.

    I’m tired of fighting. I fight for my own survival, and I’ve fought for the survival of others. I’m sure we made a difference but it’s obviously not been a big enough one. I’m tired, and I’m angry.

    So scare the kids, frighten the living daylights out of them, because they can’t afford to put their hands in the fire to learn that it’s hot.

    Next time I’m on a ward, and perhaps that will be the last time, someone should take my photo and take my testimony and these should be joined by all the other stories – a living aids quilt, something far more tangible, real, frightening and now. I’m too tired to fight anymore and other people need to pick up the baton, because younger generations are going to experience just what my generation did in the 80’s and early 90’s.

    Young gay men, if you don’t act now, you will be engulfed by darkness, and the cemeteries will be full of your friends. I’d hate to see this happen, please let it not.

    JJP

    June 28, 2010 at 1:08 pm

  10. Very interesting and straight forward perspective regarding a very serious issue that, like you and commenters state, is at times swept under the rug. Disgraceful.

    Furthermore, like others have stated in the past, I truly do enjoy your writing style and the topics in which you raise in your blog. I’ve spent some time over the past weekend re-reading past entries to gain perspective (as this is what I normally do with bloggers).

    And to culminate my comment: It is my firm belief that NOTHING is worth a “giddy, bareback orgasm.” Period.

    oskyldig

    June 28, 2010 at 4:46 pm

  11. As the negative partner in a serodiscordant relationship (that would be tough to fit on a business card…) I’ve read this article with great interest. Whilst I agree with the principle of more detailed and graphic deterrents to high risk sex practices, I am given to one reservation.

    The highly successful, graphic anti-smoking campaigns are brilliant- but to what degree do they instill negativity towards smokers themselves? Some would argue that smoking is a choice- but so is barebacking.

    As such, a similar anti-AIDS/HIV campaign may demonise people with AIDS/HIV as much as the virus and causes of infection themselves. It’s still a very good idea, but could bolster the stigma still associated with AIDS/HIV. Now, I don’t have a better idea- just articulating a niggle.

    That being said, when I started my relationship, I thought I was pretty au fait with the effects of HIV. If I’m conservative about it, I probably know about double what I knew before meeting my partner. I’m still learning new things, including a new turn on something I already knew from this article. Thank you for your brilliant writing, to which I intend to return in the not too distant future.

    Brendan Jones

    June 29, 2010 at 4:04 pm

  12. You wrote an amazing blog I have a story I need some help if you have a minute shoot me an E-mail

    Derek Canas

    June 29, 2010 at 4:06 pm

  13. An entire compendium could be (and many have been) written about the implications and dangers of sexuality: diseases are far from being the only ones. Pregnancy, relationships, marriage, divorce, betrayal and breakup, vulnerability and self-image, self-esteem and the lack of self-esteem, all of these are intimately and irretrievably linked to sexuality. Walt Whitman poetically, and wisely, said:

    “Sex contains all.
    Bodies, souls, meanings, proofs, purities, deli-
    cacies, results, promulgations.
    Songs, commands, health, pride, the maternal
    mystery, the seminal milk.
    All hopes, benefactions, bestowals.
    All the passions, loves, beauties, delights of
    the earth,—
    These are contained in sex as parts of itself,
    and justifications of itself.”

    Too many vital issues of human life are contained in sex to allow us to be minimalists and simply say: “Now ask yourself this: Is a few seconds spent having a giddy, bareback orgasm worth that?” Many people, including myself, will frankly answer: YES. And I’m not alone. I have read testimonies of intelligent and lucid people who have bluntly stated that they have not and could never incorporate a condom into their sex life, in spite of all the harsh consequences they could endure — or have endured (as is my case). Furthermore, fear may be a deterrent for some people, but it is a definite human reality to want something all the more simply because it is dangerous and forbidden. It is a central myth in the hero’s quest that the very thing he is not allowed to do will end up being the thing that he will crave and want to do the most. It is also another perplexing human reality that we hardly ever learn from the mistakes of another. It has been a repeated theme in human history that we only find out that fire is hot AFTER we have plunged into the flames, and no amount of admonitions will stop us until we have been burnt. Is that good or bad? Can we actually live a life that is care-free, disease-free, stress-free? Can a condom solve these age-old human dilemmas?

    Yes, make people aware that there are consequences to unprotected sex. But don’t treat sex as apple pie, as something that can be decided, resolved or treated with fear, cold reason and simple logic. In spite of all the pain and anguish and worry and dejection I have had to live with in my 12 years being HIV+ , I do not regret any orgasm I have had, however unfortunate or short lived.

    SG

    SG

    June 29, 2010 at 4:46 pm

  14. An entire compendium could be (and many have been) written about the implications and dangers of sexuality: diseases are far from being the only ones. Pregnancy, relationships, marriage, divorce, betrayal and breakup, vulnerability and self-image, self-esteem and the lack of self-esteem, all of these are intimately and irretrievably linked to sexuality. Walt Whitman poetically, and wisely, said:

    “Sex contains all.
    Bodies, souls, meanings, proofs, purities, deli-
    cacies, results, promulgations.
    Songs, commands, health, pride, the maternal
    mystery, the seminal milk.
    All hopes, benefactions, bestowals.
    All the passions, loves, beauties, delights of
    the earth,—
    These are contained in sex as parts of itself,
    and justifications of itself.”

    Too many vital issues of human life are contained in sex to allow us to be minimalists and simply say: “Now ask yourself this: Is a few seconds spent having a giddy, bareback orgasm worth that?” Many people, including myself, will frankly answer: YES. And I’m not alone. I have read testimonies of intelligent and lucid people who have bluntly stated that they have not and could never incorporate a condom into their sex life, in spite of all the harsh consequences they could endure — or have endured (as is my case). Furthermore, fear may be a deterrent for some people, but it is a definite human reality to want something all the more simply because it is dangerous and forbidden. It is a central myth in the hero’s quest that the very thing he is not allowed to do will end up being the thing that he will crave and want to do the most. It is also another perplexing human reality that we hardly ever learn from the mistakes of another. It has been a repeated theme in human history that we only find out that fire is hot AFTER we have plunged into the flames, and no amount of admonitions will stop us until we have been burnt. Is that good or bad? Can we actually live a life that is care-free, disease-free, stress-free? Can a condom solve these age-old human dilemmas?

    Yes, make people aware that there are consequences to unprotected sex. But don’t treat sex as apple pie, as something that can be decided, resolved or treated with fear, cold reason and simple logic. In spite of all the pain and anguish and worry and dejection I have had to live with in my 12 years being HIV+ , I do not regret any orgasm I have had, however unfortunate or short lived.

    SG

    June 29, 2010 at 4:49 pm

    • I would like to know if SG is open about his HIV status to the people with whom he has unprotected sex with?

      Stephen

      June 29, 2010 at 5:02 pm

      • Reply to Stephen posted below.

        SG

        June 29, 2010 at 6:28 pm

  15. Might I add this posting about a close friend dying last week of PCP pneumonia, of all things.

    http://marksking.com/my-fabulous-disease/an-aids-golden-oldie-spinning-again/

    Mark
    MyFabulousDisease.com

    Mark S. King

    June 29, 2010 at 5:00 pm

  16. Hi Stephen

    I am currently in a long-term relationship with an HIV+ man, and we have been together for 2 years now. We have both agreed to have unprotected sex, and our doctors are also aware of it.

    But even before this relationship, I always made it a priority to tell my partners upfront about my HIV+ status.

    ; )

    SG

    June 29, 2010 at 5:07 pm

  17. Wow – a really powerful blog post!

    I work for a HIV campaign called MTV Staying Alive – http://www.staying-alive.org

    If you were willing I would love to talk more with you about the prospect of getting a guest blog from you –

    Thanks
    Ben

    Banders

    July 5, 2010 at 9:13 am

  18. I agree how powerful this message is. A very good friend of mine was informed a yr ago of being HIV condition. This opened our friendship groups eyes to HIV. I’ve been in gay clubs for ten yrs and never thought I’d ever know any of “that type of person”. But naively I now realise it’s all around and could have easily been me. Ur blog is amazing spread the word, I love ur honesty and again think ur very lucky to have a v special mum!

    Otterboy xx

    James barker

    July 16, 2010 at 6:42 pm

  19. I have to disagree with your comments on bring back the fear.

    You say that the Smoking campaigners have got it right with posting pics of lungs etc on packets of fags.

    The fact is they haven’t…. more people than ever smoke. Those adverts do nothing. They are not stopping people from smoking. If those adverts worked nobody in this world would smoke.

    Fear can work well in some cases but it’s not the answer. Education is the key to eradication. Sex and the realities of sex needs to be discussed more in Schools. The fact is gay sex is not on the agenda in education circles. This needs to change.

    Fear can give you a punch but after a while, just like the images on the fag boxes people ignore it.

    But I will say… your three lines of what it’s like to live with HIV was more powerful than any advert I’ve seen. Maybe that’s the key.

    Flamer

    January 22, 2011 at 11:47 pm

  20. […] What would I have done if I’d had the chance to speak with Seth before he tried to take his own life? Would I have told him about the liars and the cheats? Would I have told him about the rampant body fascism that dictates we should spend half our waking lives in the gym to feel accepted? Would I have warned him about the dangers of men who just want to get laid and don’t care about passing on HIV? […]

  21. […] may remember a while back I wrote a post called ‘Why we should never stop being scared of AIDS’, and I stand by that sentiment. You should be damn scared of AIDS — it may be a manageable […]

  22. Like that your headline created me click the link in the google search. Great content. Thanks for sharing! http://www.steppingstonesfeedback.org/forum/viewtopic.php?f=7&t=37287

    Matthew Weintz

    December 23, 2011 at 7:25 pm

  23. […] may remember a while back I wrote a post called ‘Why we should never stop being scared of AIDS’, and I stand by that sentiment. You should be damn scared of AIDS — it may be a manageable […]

  24. […] What would I have done if I’d had the chance to speak with Seth before he tried to take his own life? Would I have told him about the liars and the cheats? Would I have told him about the rampant body fascism that dictates we should spend half our waking lives in the gym to feel accepted? Would I have warned him about the dangers of men who just want to get laid and don’t care about passing on HIV? […]


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