Being an activist in the world of HIV is nothing short of a roller-coaster. You have your ups, your downs and sometimes you just want to stop the ride and get off. But like all roller-coasters, the sense of achievement makes it worth it in the end.
If you’d come up to me three years ago and told me that not only would I be HIV-Positive but I’d also be travelling the world telling politicians, TV news crews, charities and anyone else that would listen about my diagnosis I probably would have suggested that you lay off the sauce. But that’s where I am, and even now it’s still all a little surreal.
At 9am on August 4th 2011 I was sat in a Sexual Health clinic in Birmingham, trying to cope with jet lag and the overpowering smell of floor disinfectant. Just five minutes later I’d get the news that would change my life forever, that I was HIV-Positive.
That evening I was sat with my friend, the only person I knew who was HIV-Positive, and we were going through the huge bag of leaflets and books I’d been given by the clinic. Both of us, as single gay men, were dismayed at the offering. Many leaflets were so basic that they were almost pointless, whilst others were so technical that we couldn’t get our heads around them.
But one thing they all had in common was that they went so far out of their way to avoid implying that HIV was a “gay condition” that they barely mentioned gay men at all. Leaflets talked about pregnancy, straight couples, older people (all important topics I agree) but young gay men? We’d been left out.
Having spent the majority of my life on the internet and social media (I’d had a computer since the age of five), I took to Twitter. I set up an anonymous account as UKPositiveLad and started following HIV charities and whichever publicly positive people I could find, but there weren’t many.
I’d only ever intended the account as a way for me to read other peoples content, not to post – I mean who’d be interested in that? It quickly became apparent that, even on Twitter, the voice of young positive gay men was lacking. So one week after my diagnosis I started writing.
I wanted to share my journey with the world. I was completely ignorant in almost every area of sexual health, and especially HIV, until my diagnosis. I’d gone from a school who didn’t teach even the basics of sexual health straight into a seven year relationship where it wasn’t really a concern – and then suddenly I was single in London without the knowledge I needed to look after myself. If this could happen to me, I was sure it could and was happening to other people too.
Over the past two years I’ve gone from tweeting, to blogging, to writing for magazines, appearing on TV and radio shows, becoming a charity ambassador, even speaking at the House of Commons and European Parliament and later this month I’ll be speaking at the United Nations. But at the core of everything I do is that memory of me on August 4th 2011 feeling scared and desperate for better, more appropriate, information.
It’s not been plain sailing however. In my battle to fight stigma I’ve come up against more than my fair share. I’ve had to deal with people calling me a liar, claiming that I don’t have HIV but I just want the limelight, being snubbed by other HIV activists for perceived “muscling in” on their patch. One of the worst incidents however was when I was on a first date with someone, and their friend texted to warn them that I was HIV-Positive. A particular low point.
Being so well known for what I do can cause problems too, I’ve had HIV/AIDS insults made at me both in person and online, but I’m thick skinned and can deal with this – I just tell myself “well at least they’re talking about HIV”.
On the other hand being well known has been a great tool for helping people. I’ve lost count the number of times I’ve had people message me on Grindr or similar sites/apps and ask me for HIV information – which I give readily and as tailored to them as I can do. Sharing information, getting the knowledge out there, and fighting stigma are as important to me today as they were 28 months ago, and I hope for a long time to come.
I’d like to finish this post with a little story from a couple of days ago…
It was the early hours of the morning, about 1am, I couldn’t sleep as normal so I was on the sofa playing on the XBOX when Grindr buzzed. That was the start of a nearly two hour conversation with a guy who’d been diagnosed 18 months ago and was having a hard time coping. I pointed him in the direction of the MyHIV.org.uk forums and some social groups at a local HIV clinic – being a self promoter I also pointed him towards beyondpositive as I thought the columns might help too. The next morning I’m going through my emails and there’s one from the guy I’d been talking to. He told me he’d planned to take his own life that night, but having talked with me, and read the story about my own suicide attempt that he’d changed his mind and wanted to thank me.
Things like that, for me, make the hard work all worthwhile.
Tom Hayes (@UKPositiveLad on twitter)