A decade. 10 years. 120 months. 521 weeks. 3,650 days. That’s how long I’ve been living with HIV. A decade today.
21st July 2011
I went to a city centre clinic for a routine sexual health check-up, nothing out of the ordinary, just a quick six-monthly check. The next day I flew to Gran Canaria for a lads holiday. Everything was fine.
Just a few days into our holiday I started receiving phone calls from a Birmingham number. This being before the era of free roaming I kept ignoring the calls as I didn’t want to pay to speak to what I assumed was just a cold caller. But the calls persisted. I eventually answered.
“Is this Tom?”
“It’s the clinic, can you come in and see us this afternoon?”
– “No, I’m on holiday in Gran Canaria.”
“Shit. I mean, when can you come and see us?”
– “I’m here for two weeks, is it urgent?”
“Fuck. Don’t have sex with anyone and call us as soon as you get back.”
I knew they wouldn’t react that way for chlamydia, so I felt fairly justified in the ensuing panic that ruined the rest of my holiday – not wanting to ruin my friends’ holiday I did my utmost to hide what was going on in my head and my chest. That was hard.
4th August 2011
I arrive at the clinic so early that they’ve still not unlocked the doors. I was the first person let into the waiting room – I still remember the damp disinfectant smell from the cleaner’s mop and bucket.
Although it felt like hours were passing in reality it was probably only 15 minutes until I was seen. The nurse who confirmed what I already knew was nice enough but somehow already running behind schedule, my bum had barely touched the seat before she broke the news to me. Within the space of a few minutes, I was given the news, booked into a HIV clinic, given a bag of leaflets, and shown the door.
There were so many unanswered questions swirling around my head. How long will I live? Who do I need to tell? Will I ever have sex again? Will I ever be able to be in a relationship? I sat on a park bench and flipped through the leaflets I’d been given. Nothing made sense.
Due to how my diagnosis was communicated and handled by that clinic I fell out of care. I didn’t attend my HIV clinic appointments for several months despite calls and letters from the HIV care team. I didn’t want any part of the system I’d already experienced. It wasn’t until a friend of mine, who I knew to also be positive, gave me a good talking to that I finally linked back into the care system.
My first appointment was with two lovely nurses Jay and Asta. The clinic at the time was a run-down death-trap – but the warmth, confidence and comfort exuded by the two more than made up for that.
Within a couple of weeks, I was on treatment. Within a couple of months, I was already undetectable. Although in 2011 we weren’t able to say that undetectable equalled untransmittable yet – although there were rumblings.
Now, a decade on, I’m as healthy as ever. My care is overseen by the wonderful Dr Laura Waters who is as talented as she is fashionable, and my treatment is as simple as one pill once a day. That treatment means I’ll live just as long as any of my peers, keeps me healthy and means I can’t pass on HIV. Something that was unthinkable at the time of my diagnosis.
Getting on with life
The decade following my diagnosis has been a whirlwind. There were failed relationships, a change of career, appearances in parliament as well as the EU and UN, TV and radio work and I got heavily involved in HIV community work.
When I shared my HIV status on twitter back in 2013 there were very few of us who wanted, or were able, to do so. I remember the fear in my chest when I posted my first face picture on my @PositiveLad twitter – which up to that point had been anonymous. I received plenty of abuse, but that was swallowed up by the outpouring of love and support I received – and am lucky enough to still get today.
Dr Steve Taylor, who set up the charity Saving Lives UK, spotted my potential and took me under his wing. He helped me see the huge impact that sharing real-life stories can have – both in tackling stigma and improving the lives of people living with HIV. I’m proud to now serve as both a trustee and the Social Media Manager for the charity. It’s the little charity with the big impact, and I get to work with some wonderful people.
Building a future
In 2016 I met Jimmy. We connected via twitter and shared a passion for HIV activism, so it wasn’t long until we met up in real life to discuss a potential collaboration. November 2016 had a public showing of the AIDS Memorial Quilt at St Paul’s Cathedral and unbeknownst to me Jimmy was one of the guides. We flirted all evening and shared a kiss at the end of the night.
Fast forward five years and we now share a home together in London, we have a dog, and we’re set to get married in April next year. Life comes at you fast – sometimes when you most need it.
If you’d told 25-year-old Tom, on the 4th August 2011, that he’d find himself where I am now, surrounded by the people I know now, I don’t think he’d believe you.
My first decade with HIV has been a rollercoaster, there’ve been high highs and low lows, but each of those bumps has given me the opportunity to grow into who I am now. But, like the best rollercoasters, it’s left me with a big grin on my face.
To the next decade.
All my love.
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