Today marks five years of my journey with HIV. It’s our anniversary, or annhiversary if you will, and it seems as good a time as any to reflect on some of what’s happened over that time.

Five years ago, to the day, to the hour, I was sat in a park in Birmingham feeling numb and wondering what had gone wrong. If only I could go back five years and tell myself “you’re going to be OK”.

I had been in Gran Canaria with friends when I received a phone call from the GUM clinic asking me to come in to talk to them about the results of my recent sexual health check up. The woman at the end of the phone didn’t know how to deal with the news that I was abroad and wouldn’t be back for two more weeks – so she simply said “Fuck. Don’t have sex and call us when we get back” and promptly hung up. That’s when I knew I had HIV, but I had to wait another two weeks to find out for sure.

Five years ago I found myself sat in the GUM clinic, I can still smell the bleach now, waiting for the first appointment of the day. I’d my bum had barely touched the seat before the nurse told me my tests had come back positive for HIV, confirming what I already knew. I was given a cup of water and a bag of leaflets and sent on my merry way.

Sat in the park I was all but certain I was going to die, and even if I didn’t die I was sure I’d never be in a relationship or have sex ever again. I felt as though my life was coming to a screeching halt.

Fast forward five years and what’s changed? Well I’m still single, but I have had a couple of relationships during that time but I’m happy where I am now. I’ve had sex too, quite a bit, but not as much as I’d perhaps like – but hey I’ve been busy!

Talking in the European Parliament about HIV stigma
Talking in the European Parliament about HIV stigma

Busy is putting it mildly. In the last five years I’ve written for magazines, newspapers, started my own blog, started this website that gives other people with HIV a voice, I’ve spoken on TV and on radio, I’ve addressed the United Nations, I’ve spoken at the European Parliament and the European Commission, I’ve launched a cricket final, become trustee of a HIV awareness charity (Saving Lives), I’ve trained Youth Advocates with UNAIDS, I’ve spoken at the Houses of Parliament, I’ve spoken at conferences around the world – and I’m far from done yet.

The world of HIV moves so quickly, what HIV means to someone newly diagnosed today is vastly different to someone diagnosed five years ago – someone like me.

We’ve seen the results of the START trial (which I took part in) recommend that people who are diagnosed today start treatment as soon as possible after diagnosis to help them achieve better long-term health and prevent onwards transmission.

We’ve seen the results of the PARTNER study which recently published their six year findings which shows that people who are on treatment with an undetectable viral load are incredibly incredibly unlikely to pass HIV on to negative partners, even without condoms.

We’ve seen the advent of PrEP which by preventing HIV infection in negative people when taken daily is giving more and more people the confidence to sleep with and date HIV positive people.

These are amazing revolutions in the way we think about HIV, but it’s not all roses sadly.

Changes to the way sexual health, support services and HIV are ring-fenced across NHS and Public Health mean that we’ve seen vital support services for people with HIV decimated. Birmingham, my city, the second biggest city in the UK with 1.3m residents in the city, and 5.6m when extended out to suburbs & metro area, has lost both of it’s HIV support services in the last couple of months. We are a city without HIV support, and a city with a rising infection rate – especially within MSM and the Caribbean communities.

Example of some of the messages I get on Grindr
Example of some of the messages I get on Grindr (click to enlarge)

People with HIV still face stigma on a daily basis. I get offensive messages every day on apps like Grindr & Scruff. I’ve learnt to have a thick skin when talking to people about HIV but some people don’t have that ability and it hurts them. Every insult like a paper cut among a sea of paper cuts – slowly chipping away at your self worth and self confidence.

Recently we’ve even seen HIV positive people stigmatised by NHS England – the very organisation that’s supposed to look after us. How do we even reconcile that? How do I even deal with the information that NHS England’s top man thinks that me and my friends should be at the bottom of the pile when it comes to our health needs? It’s both heartbreaking and infuriating.

Five years on I’m healthy, I’m happy, I’m undetectable and uninfectious. I’m stronger than ever, and I need to be because the fight goes on.

I’d like to say a massive thank you to everyone who’s been so supportive over the last five years. To my friends and my family who’ve been a rock and a constant source of support, and the amazing people I’ve met on this journey so far who’ve helped me keep doing the work I’m doing – or just show up with a bottle of gin and a hug when I need it. I love you all so much.

So let’s raise a glass. To me and my HIV, Happy AnnHIVersay.

Tom Hayes
(You can follow me on twitter as @PositiveLad)

Tom Hayes

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  1. Here I am, thirty years later and it appears as though we are still alive alive kicking.
    Congratulations on all the progress in so many areas.
    You are truly, awe inspiring.


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