What taking PrEP has meant for me

Greg Mitchell lives in England, and took part as a HIV-negative man in the PROUD study, assessing PrEP (Pre-Exposure Prophylaxis). Here he talks in his own words about taking PrEP, the effects it had on him and how other people reacted. He prepared this piece originally as a speech at the HIV Scotland 'PrEP Roundtable Discussion' event. Please note that it does include some frank language.

This story is only one of many and it does not represent the experiences of everyone potentially at risk of HIV. If you have a different story, we'd like to hear it - please do get in touch.

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"I’m not a medical professional or a scientist. I am simply someone who is on the PROUD study in England, and I’m here because I believe passionately in PrEP. I’m going to talk about what being on PrEP has meant to me personally, and also about how people – friends, family, and the community in general – have reacted to the news that I am on PrEP.

"So first some background. I had never even heard of PrEP until November of 2013, when one of the nurses at the WMP suggested it to me. I’ve always believed in total honesty about my sexual encounters when visiting a clinic, and, though I hadn’t realised it or admitted it to myself, it seemed my behaviour was becoming more risky, enough for me to fit into that at-risk group that would definitely benefit from taking PrEP. I talked it through with my best friend, who has been on Truvada as part of anti-retroviral treatment for a few years now, and decided it was something I’d like to try. I then applied, was accepted and was delighted when I was put onto PrEP straight away, not into the deferred group that they had at that time. It was all very quick and I’ve now been on PrEP for almost two years. I can honestly say I had no side effects, apart from some vivid dreams the first week or so.

"It began to dawn on me that I was protected from HIV"

"Physically then, the effect was minimal, or negligible. But how about the psychological effects? Well at first nothing much changed, but, as it gradually began to dawn on me, that I was protected from HIV, a cloud started to lift.

"You see, I’m a product of the pre AIDS generation. When I came out there was no HIV, or at least we didn’t know about it. I’m one of the lucky ones. I didn’t die and I remained HIV negative, obviously or I wouldn’t be on PrEP. How I got here is no doubt down to a little judgement and a lot of luck, and I mean a lot of luck. Statistically I should be a statistic.

"Back in the 80s the fear of AIDS stopped me having sex completely for quite a while. Fear of death does that to you and those were scary times. But once I did start having sex again, for the first time in my life, I started using condoms. I hated them. Sex didn’t feel so good any more, but if you wanted to stay alive, there was no alternative. Sex had become a dangerous business. I mean people I knew were dying. If you didn’t see someone for a while, you hardly dared ask what might have happened to them.

"I didn’t get tested. In those days a positive diagnosis was tantamount to a death sentence. We were even told that the mere knowledge that one was positive could be enough to precipitate a downturn in one’s health. So I worried. I fretted. I remember I panicked about it so much that at one point I even started suffering from night sweats. There was nothing wrong me. And anyway, at that time, what was the point knowing? But closing my mind off like that also meant that I remained ignorant of the advances in HIV treatments as they happened. Then, in 2001, a very close friend of mine died. He was admitted to hospital with pneumonia. He had never been tested for HIV and by the time pneumonia took hold he had no immune system left to fight the disease. He died soon after. If he’d only been tested and on treatment then he’d still be with us today. I got tested straight after my close friend’s funeral, and from that day on I became much more aware of my sexual health.

"However, even after this, my adherence to safer sex started to falter. Not straight away of course, but little by little I was slipping. At first it was just what they call dipping, you know when you just put it in for a few minutes without a condom, and think, oh well that doesn’t count. I’m not actually fucking. But actually it does. Then there would be other occasions when I wouldn’t use a condom at all. There would be discussion, risk assessment if you like, and I would decide to take the risk. It may have been calculated, but it was still a risk. And I found every sexual encounter was beginning to become a minefield. I was finding it harder and harder to use condoms. I’d lose my erection. I’d become so fixated on the business of getting the packet open, and the bloody thing on, that I could barely think of anything else. They say condoms don’t have any side effects. Well isn’t erectile dysfunction a side effect?

"PrEP seemed like a miracle"

"I was beginning to give up the idea of penetrative sex altogether. So PrEP seemed like a miracle, and it changed my sex life. Mainly, and importantly, because it has removed anxiety. Gone. That’s it! I know I can’t get HIV. I know I can’t pass it on. For the best part of 30 years now, there was a voice whispering in my ear every time I had sex. 'Be careful. You could get HIV.' And, you know what? That voice has gone. I can’t tell you how liberating that is. After years of worry about HIV, suddenly I don’t have to worry any more.

"To me it was a no brainer. Short of a vaccine, this seemed to me to be the most important advance in HIV research since the discovery of anti-retroviral treatments for HIV positive people. And because I felt so liberated, because I felt it was such an amazing breakthrough, I decided I wanted to get the message out there, be totally honest about what I was doing, and extol the virtues of PrEP. I thought that it would be greeted with open arms, and this is when I was surprised.

"Now I have always been totally open about what I did and do for a living, which has given me a small amount of notoriety within the gay scene, and it is no doubt this notoriety which has enabled me to speak out about PrEP in the gay media and at certain gay events I’ve been invited to. I’ve had articles in Qx and in TheGayUK, my #Truvadawhore photo has been in Attitude and is about to be published in French music magazine Les Inrockuptibles.

"I was called an irresponsible slut"

"What actually got me involved and out there writing about PrEP was an article written by one of my co-writers at TheGayUK which condemned the use of PrEP. It was very negative and inaccurate on many points, and I decided I needed to retaliate with an article that got the facts right (Sheena McCormack was a great help here) and to shed a more positive light on PrEP. In my naivety, I expected people would be more open to it once they read the facts, but I actually ended up being on the receiving end of some pretty nasty comments. I’d worked in the sex industry for many years, but this was the first time I’d experienced real slut-shaming.

"I was called an irresponsible slut who didn’t give a damn about the sexual health of anyone else, which, considering the reason I was doing PrEP was precisely because I was concerned about my sexual health and that of those I was having sex with, was a little hurtful. After I’d calmed down a bit from suffering those reactions, I started to look at the possible reasons for this negativity, for without understanding those reasons, we will never be able to address them, or break down prejudices.

"I questioned why the reactions of my family and straight friends were so positive, when those of some of my gay friends were not. Could it be that straight and gay people saw condom free sex in different ways? For straight people, condom free sex was not just about pleasure, it was also about conceiving. It was about life. Whereas, for us, it had become associated with death.

"Now a few months ago, I saw a video of a speech by the magnificent Irish drag queen, Panty Bliss, which discusses the inherent homophobia that exists within our society, that homophobia which makes us ever alert, unable to make the slightest unconscious gesture of affection towards our partner without first checking our surroundings to see if it’s safe. He touches on the fact that we have become so used to this situation, that we have come to accept it as ok. He points out that this homophobia comes down to a basic distaste for what we do in bed, specifically anal sex, and that these homophobes, when they look at us don’t see a person, they just see a sex act.

"Our problem lies in internalised homophobia"

"And I think our problem lies in an internalised homophobia, which makes us ashamed of who we are, and, more importantly, ashamed of what we do in bed, particularly if we enjoy anal sex. Let’s face it sex, any kind of sex, has long been about shame, unless it was to bring about a new life, which of course made gay sex more shameful still. I suppose we enjoyed a few years of relatively guilt-free fun when sex between two men was no longer illegal, as long as it was in private of course, and the only risk attached to it was the chance of an easily treatable STD. Then AIDS came along. We had to deal with the shame of realising that our pleasure was killing us, that anal sex was one of the main transmission routes for this terrible virus. Worse still, the Reagan administration in the US didn’t lift a finger to help us because it and a great swathe of America didn’t actually care that we were dying. That’s pretty hard to deal with.

"Eventually, due to the efforts of campaigners like Peter Stalley, we came up with drugs to keep us alive and we discovered that we could save ourselves and our partners by wearing a condom, and the term safer sex was coined . And that’s when condom free sex became really shameful. Now, for all the advances that have been made in recent years, for all the new therapies, the fact that we now know positive people with an undetectable viral load can’t pass on the virus, that shame about condom free anal sex still persists.

"We feel shame about that time we were drunk or high and threw caution to the wind. We woke up the next morning and felt shame.
We felt shame about that time we realised we didn’t have any condoms but went ahead with it anyway. We felt shame about that time the condom split but we kept going because it felt so much better, and, here’s the thing, we felt really ashamed about admitting, even to ourselves, that one fact. Sex without condoms feels better. There I’ve said it. And apparently I’m not alone, as the majority of people on the PROUD study gave the reason that “it felt better” as the main one for having condom free sex. Not being high or drunk.

"Such is the shame about condom free sex, that we even coined a new word for it, a loaded word that carried with it a sense of risk. Barebacking. And more and more people were willing to take the risk. We might not actually want to get HIV, but at least we now weren’t going to die if we did.

"Now I wish we could get rid of that word “barebacking”, banish it from our vocabulary, because barebacking when you’re protected isn’t risky, or shameful, it’s just natural. That said, I understand why it’s going to take some time for that message to get through, and it’s only by people like me being up front and talking about it that the message will get through.

"I think I’ve probably now heard every argument imaginable against PrEP, and most, to be honest, are just side issues, but the one I hear most often is that it will encourage promiscuity, which was exactly the main objection to the birth control pill for women back in the 60s. Well we were able to get over that problem, and the birth control pill is now, in the west at least, the most commonly used form of contraception for the majority of women, mostly because they were able to take control of their own sex life.

"PrEP puts me in control"

"And this is the point about PrEP. It puts me in control. I don’t have to worry about whether a partner is telling me the truth about their status. I take my pill every day and I know I’m protected. The problem with condoms for some is that they leave all the negotiating to the final moment, when we can do things against our better judgement. If we’re on PrEP, then we have taken care of that side of things beforehand, and it means we are still protected from HIV, should our judgement be impaired.

"The other good thing about PrEP is that we don’t necessarily have to be on it for the rest of our lives. Circumstances change. When I started the PROUD study I was taking risks with multiple partners. In the last few months I have entered into a monogamous relationship and I am beginning to consider coming off it. The IperGay study in France suggests that people can also target their PrEP use, depending on their sexual activity.

"This is the good news we need to give men who have sex with men. That PrEP allows us to take control of our own sexual health. PrEP can eliminate the difference between positive and negative and we can become a community that is no longer split by our HIV status. Quite the opposite of being irresponsible, PrEP is taking responsibility for our own health, and those with whom we have sex. That’s why we need PrEP – and we need it now!"

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