This article by Kristian Johns first appeared in FS Magazine, a publication of GMFA here.
In the last six months, it seems we don’t go a week without a new headline or article heralding the ‘dawn of a new era’ in HIV treatment.The headlines scream: “Genetically Engineered HIV Antibodies Have Potent Impact”,“HIV’s ‘Invisibility Cloak’ Discovered”, “Palindromic ‘Junk DNA’ Could Hold The Key To Curing AIDS”. And on the domestic front, medication is getting better, people are living longer, and HIV is now seen as a ‘chronic condition’, rather than the killer disease it used to be. We have PEP, PrEP, vaccine studies, and human trials of varying success.
It seems the fight against HIV is gathering momentum and thundering towards what some believe is the inevitable – a cure.
I remember the day I got diagnosed. I say ‘the day’ – I think it was a Tuesday, but I can’t remember the exact date. You’d think a date like that would be etched in one’s memory. Mine’s not. I couldn’t even tell you if it’s been eleven or twelve years this year. To be honest, some days I don’t know whether I’m 33 or 34, so that could be just age, or all the ketamine I took in my 20s, one or the other. But the truth is, I can’t remember because HIV defines me less as time goes on.
I try not to live in the past. It’s over, it’s done. Nothing you can do to change it. Marty McFly and his magic DeLorean aren’t real, bucko. It’s all about the present. And right now, the biggest stresses in my life are managing my chronic insomnia and finding a route to work that doesn’t involve sitting in my car for an hour and a half on the M25.
But what if there was a cure? I mean a real life cure. What would I gain? More importantly, who would I be without HIV?
People ask me why I don’t do much ‘front man’ stuff any more. I don’t give speeches these days. I don’t lend my face to every campaign under the sun. I don’t trot my story out in the press, on the radio or on TV. I’ve told it a great many times. Fuck, I’ve probably even embellished it a little over the years. Perhaps it’s wrong of me, but I think there’s only so many times people are willing to listen to the same story. It’s nothing special. Had sex. Didn’t think of the consequences. Thought I was invincible. Wasn’t.
The truth is, I needed that ‘front man’ stuff in the early years as much as it needed me. I got my self-esteem from it. I had a whole community of people telling me I was a stand-up guy. I felt better about myself despite this horrible illness. Having HIV was OK, because everyone said it was, and gosh, how brave and inspirational was I to be out there telling my story?
At the age of 22 or 23 – whenever it was – I was wasting my life. I was checking out of reality in a haze of booze, drugs, clubs and sex. When the doctor spoke the words “Kristian, I’m afraid your test has come back positive’, my world changed forever.
For years, I used it as a get-out-of-life-free card, pissing my existence away in an even bigger haze of more booze, more drugs, more clubs and even more sex.
And then something weird happened – HIV made me grow up. I realised I wasn’t going to die. Moreover, I realised I wanted to live. I wanted to help others like me. And all of a sudden my life had a purpose. Sounds schmaltzy? Develop a lifelong illness and see if it doesn’t give you an epiphany.
So do I regret contracting HIV? Damn right I do. Would I love to wake up in the morning and not have to throw a cocktail of pills down my neck? Yes. I’m sick of being HIV-positive. I’m sick of pills, I’m sick of doctors, I’m sick of having sex in a plastic bag. I want a life free of medication and stigma. I want to add my ridiculously awesome workmates on Facebook without worrying they’ll see articles about life with HIV with my name attached to them. I want to have skin-on-skin sex with the man I love and not worry about sentencing him to everything I’ve just listed.
When I look at all the areas of my life that HIV has touched – my family, my friendships, my work, my outlook, my foreign travel plans, my fucking BUPA policy for fuck’s sake – it’s hard not to get misty-eyed over the prospect of a body and a life free from the shadow of this virus.
But HIV isn’t a hairstyle. It’s not a job. It’s not a beer gut. It’s not something you can simply change with a little bit of hard work. Right now – today – HIV is a life sentence, and even though I feel like I’ve served my penance for it, I’m stuck here.
But on the flipside, and despite my earlier claim to the contrary, HIV has defined me. And I’m not sure who I’d be without it. In a perverse way, I’m fucking proud of myself. I’m proud to look people in the eye and tell them who I am and what HIV has made me. I get satisfaction from helping the newly diagnosed or those who are struggling. I feel pride when I look at what I’ve achieved.
A straight male friend of mine texted me the other day to say he was taking part in human vaccine trials. He did it because my story had opened his eyes. I’m proud of that. I’m fucking proud to have inspired people. Without HIV I’d feel a little... lost, like when you get on the phone to customer services ready to have a good old barney and they instantly defuse you by being nice and helpful. What the hell would I fight?
I can’t punch HIV. I can’t argue with it. I can’t reason with it. All I can do is this. And this is all I’ve known for most of my adult life. And while HIV may not define me as much as it did twelve years ago, it did one thing that an HIV-free life never did.
It gave me a reason to live.
About the author: 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. Twitter: @guy_interruptd
This article was taken from FS magazine issue 139.To view this in DIGITAL format CLICK HERE