Nine years ago today, on the 4th August 2011, I was told that I had tested positive for HIV following a routine screening. So much has happened in those nine years and there’s so much to be thankful for.
1. Relearning what was important to me. When I was diagnosed I wasn’t at a great point in my life. I’d not long become single, I’d been made redundant and I was spending way too much of my time and non-existent money going out every night.
Being diagnosed put everything into sharp focus, it made me think about what I wanted to do with my life and who I wanted to be a part of that life. I knew I wanted to move away from IT and find a way to use my tech and communication skills to help people, and that’s what I’ve been doing ever since. It was also the time I chose to let go of the toxic people that I’d been holding onto for so long. It was time. Speak to many people with HIV and you’ll find that their diagnosis sparked a turning point for them too.
2. Finding a new community. Those initial few weeks after learning of my status were some of the loneliest I can ever remember. I didn’t feel like I could tell anyone, and if I could how would I even go about it? Over the course of several months I slowly and privately opened up to a few close friends which really helped ease my burden and isolation but it never felt quite like they fully understood.
I visited a couple of HIV charities but they didn’t feel like the right fit for me either. It wasn’t until I stumbled upon GMFA’s #PozPubCrawl, a Soho pub crawl for HIV positive folks, that I really felt like I could fully relax and be myself. I took that idea back with me to Birmingham and ran a positive pub there for four years until I moved away. Now, living in London, I look after GMFA’s #PozPubCrawl – the very event that helped me find myself.
3. Taking control of my health. Being twenty-five at the time I was diagnosed I’d never really thought too deeply about my health. I got up, I drank coffee, I worked, I went out until the early hours, rinse and repeat. Like most guys my age I thought I was invincible. Finding out that wasn’t the case, via a HIV diagnosis, really was a wake-up call.
I’d never thought about how strong my immune system was, how my liver and kidneys were functioning, my bone density, what a creatinine level was or even that there were good AND bad types of cholesterol? Fortunately for me I was receiving my care at an excellent HIV centre in Birmingham who took the time to bring me up to speed and helped me realise that when you’re living with a long-term condition you need to think about the future a little more than you might normally.
4. A new appreciation for our wonderful NHS. As mentioned in my previous point I’d not really thought much about my health up until this point, so other than the odd scrape I’d not interacted with the NHS too much. But that all changed on the 4th August 2011.
For most newly diagnosed people the first few appointments with your HIV clinic can be overwhelming. You’ll likely have eight or so tubes of blood drawn each visit, urine samples, perhaps a chest x-ray, you’ll meet doctors, nurses, pharmacists, health advisors, dieticians, and even psychologists.
As the months and years go by your appointments get easier and simpler – to the point when I now see my doctor once a year and have a phone check up at the six month mark. But all those people I mentioned earlier are still there, discussing your case, tweaking your care and they’ve always got your back – some of them now are even friends.
5. Treatment works! One of my biggest fears back in 2011 was starting treatment. I knew very little about HIV and even less about treatment but what I’d heard in passing wasn’t good. I remember someone saying HIV treatment gave you diarrhoea, that it would disfigure me or make me look very old very quickly – I was scared. Despite all this I put my faith in my HIV clinic and started treatment two months after diagnosis.
I won’t lie and tell you it was all rainbows and butterflies, because it wasn’t. My first combination was not good for me – despite it effectively controlling the virus it gave me migraines, hallucinations and insomnia. I raised this with my doctor at the time who didn’t want to change it because I was “doing so well”. It wasn’t until I sought a second opinion from another doctor at my clinic that I moved to another combination. Thankfully that first combination is rarely prescribed in the UK anymore.
Over the years, with the support of my doctors, I’ve changed treatment a handful of times and I’m now on combination number six. Not all of them have been changes due to side-effects – in fact the last two changes have been to make the treatment simpler, this is sometimes called “treatment optimisation”. I’m now taking a single pill, made up of two drugs, and experience no side effects and foresee myself on this combination for a long time to come.
6. Undetectable = Untransmittable! In 2008 the Swiss researcher, Professor Pietro Vernazza, released a statement that said if a person living with HIV was on treatment and had a controlled viral load they probably wouldn’t pass HIV on to sexual partners. He was publicly derided and the statement ridiculed.
In 2011 when I was diagnosed there were mutterings that perhaps Professor Vernazza was right all along but it was best not talk about it too loudly in case people with HIV heard about it.
But things changed in 2016 when the PARTNER and HPTN 052 studies presented their data. For the first time we had data from thousands of couples that proved that if a person living with HIV is taking their treatment and is undetectable that they cannot pass HIV onto their sexual partners – even without condoms or PrEP.
This started a movement, a movement of empowerment and liberation, led by Bruce Richman of the Prevention Access Campaign. The phrases ‘undetectable = untransmittable’ and ‘U=U’ were born and the lives of people living with HIV have never been quite the same since. At the time of writing 992 organisations from 102 countries, including the NHS, CDC and WHO, have signed onto the message that undetectable does indeed equal untransmittable.
7. Our voices make change happen. It can be easy to be cynical these days, and when I look at the world it’s difficult to blame you but our voices can and do affect change.
The entire history of HIV & AIDS has been led not by politicians but by activists, campaigners and charities. From the very early days when friends set up hospices and buddy schemes for support, to those first fights and protests for treatment to be made available, to today pushing for the rollout of PrEP or improved access to treatment in developing nations – our voices have always led the way.
Just because HIV is largely under control here at home it doesn’t mean we cannot and should not use our voices and our platforms to campaign for change anywhere else it is needed. In the past nine years I’ve addressed the UK parliament, EU parliament and the United Nations, I’ve spoken on TV channels around the world and written for countless publications about how we can improve the lives of people living with HIV as well as preventing new infections. Like you I am just one person – you have it in you, you just need to find it and use it.
8. The kindness of strangers. Shortly after my diagnosis in 2011 I started a blog called UKPositiveLad. Using this blog I anonymously recorded my journey with HIV – partly to help others, partly as a way to process it all myself. Never did I imagine that that small blog would grow into a platform as big as it has done today.
Social media often gets a bad rap for the abundance of trolls and disinformation, but for every fake news bot there are dozens of real people sharing their lives, forming friendships and learning from one another.
When I came out online about my HIV status in February 2012 there were very few people on social media who publicly shared their HIV status and real name / photo. I was an outlier and as such picked up a following. Fast forward to today and I’ve got an incredible group of followers and friends who’re all happily sharing their HIV status like it’s no big deal – that is progress and it’s incredible.
Thank you to each and everyone of my followers, regardless of your HIV status, for your love and support over the years.
9. Growing up and getting old. If you’d asked me on the 4th August 2011 what I saw as my future I’d probably have said I didn’t see a future. Back then I still thought HIV was a death sentence, and even if I did survive who’d love someone with HIV, right?
I had to choose to engage with care, I had to choose to put my trust in my HIV clinic, I had to choose to educate myself about my condition, I had to choose to make better decisions for my health and my future, I had to choose to seek out a community and the support I needed. They weren’t easy choices, but they were necessary ones.
It’s now 2020, the cursed year, but global pandemic aside I’d never have thought that nine years later I’d be engaged to be married to the wonderful Jimmy, that we’d have a dog or be setting up home together. But here we are.
HIV has changed. HIV doesn’t define me – me, myself and my choices do.
Thank you for following me for the past nine years, and here’s to many many more.
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