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How becoming HIV positive changed my life for the better

A year after his diagnosis, one writer reflects on his journey that almost ended in suicide and how he’s become a resource for the next generation of positive people

When I was first diagnosed with HIV in October of last year, I felt I was the only person on the planet to experience something so isolating. In reality, nothing could have been further from the truth. In 2019, there were approximately 38 million people living with HIV, and an estimated 32.7 million people have died of Aids-related illnesses since the epidemic began sometime in the mid-to-late-1970s.

The world has witnessed generations of trauma through often explicitly triggering portrayals of people living with HIV (Philadelphia, Rent, Paris Is Burning) and celebrity Aids activism (Madonna, the late Princess Diana). What I find troubling is that, somewhere between Tom Hanks’s Oscar-winning turn in Philadelphia and the final season of Netflix sensation 13 Reasons Why – criticised for its misleading and damaging portrayal of HIV as a “death sentence” – society seems to have misunderstood the reality of what it’s like to be living with HIV today.


Hey, I’m Jay, and I’m living happily & healthily with HIV. ##hiv ##sexual health ##bplusuk

♬ Coffee Shop - Ben Everman

After almost five years of monogamous relationships, I was encouraged to experience hookup culture, and see if a casual experience was something I’d been ‘missing’; my friends told me it worked for them. I travelled to Manchester to meet a guy I’d been talking to, and he ordered me an Uber to his apartment. I was only supposed to be staying for the afternoon, but, lying in our underwear in bed a couple of hours after I arrived, he asked me if I was hungry. We ordered takeaway, and an evening of intimacy ensued. In between long talks about our past, and cuddled-up musings on our respective futures, he finally asked, ‘You’re staying tonight, right?’

In the morning, we gave each other a hug in his hallway that lasted for a full minute. As I left, I felt, maybe for the first time, that I had found a soulmate. There were no parts of myself I’d felt compelled to hide; I’d laid myself bare, in character and appearance, and it was only at that moment I truly began to realise how pouring your soul out to a stranger could be so cathartic. Is this what a hookup was? And, if so, had I been failing myself for a quarter of a decade by denying myself this?

I listened to “Throwaway” by SG Lewis all the way home to Birmingham, and replayed the evening in my head. I can still see his smirking expression behind my eyes if I close them. In a poetic twist of fate, we filmed some of our more candid activities, so I will forever have the exact moment I caught HIV sitting hidden in my camera roll. It’s a shame we were a little high, so the content doesn’t look that appealing. 

“In a poetic twist of fate, we filmed some of our more candid activities, so I will forever have the exact moment I caught HIV sitting hidden in my camera roll”

A week and a half later, I was admitted to hospital with a temperature of 39.8C and an inability to stay fully conscious. My body was entering seroconversion, the period when the body’s immune response starts responding to HIV, prompting flu-like symptoms that can range from mild to severe. This process can also happen silently too, with some people experiencing no symptoms at all, adding to the importance of regular sexual health testing. I remember waking up the night before in a sweat, unaware of what was happening, convinced it would be over by the morning. In hospital, the symptoms got worse before they got better, as my doctors struggled to find an explanation.

The NHS actually failed to diagnose me altogether. In just short of a week, while I lay there hooked-up to an IV with a high fever, an inability to eat or drink and intense digestive discomfort, it felt like they viewed me simply as a ticking time-bomb. My mother was encouraged to travel across the country to say potential goodbyes. It was assumed I had either appendicitis or Crohn’s disease, and, after a CT scan and an MRI, I was left none the wiser. It was only six weeks later, after getting a private sexual health test, that I was correctly diagnosed.

I received the news of my HIV diagnosis via a phone call, while I was out shopping with friends in town. As a young man in my 20s, I’d never visualised how I would react to being told I had HIV. I excused myself from them, giving a ‘thumbs up’ when they jokingly texted to ask if I was chlamydia-free, and immediately rang my best friend, George. He told me not to worry, and I didn’t. Two days later I had my first clinical appointment, where my doctor explained how my life would change, and I walked out with my first three-month supply of pills. 

It was daunting, going through that experience alone, but that didn’t compare to the isolation I felt afterwards. The first three months were the hardest. I began to use more recreational drugs than before, as a way to try and forget my diagnosis; naturally, this worked in reverse. Under strobe lights with a room full of happy, healthy people, I was only reminded that I didn’t feel I belonged any more. I began to lose focus on my future, and reality only got more fuzzy; by the following February, I was thinking about ending it all. And I almost did.

In March, four and a half months after my diagnosis, I wrote my suicide notes on a train from Liverpool to Birmingham. I had started seeing someone who studied at university up north, and although I was open and confident around my diagnosis with him, and he was, for a time, my greatest support system, even he couldn’t repair what I felt was broken inside me. I addressed personal essays to everybody close to me. If this were to be my final say, I wanted to make sure I left with everyone knowing exactly why I had made this decision.

Ultimately, that’s what saved my life. I rang my mum because I wanted her to hear from her son that he’d caught HIV and it had become a cross too heavy to bear – her reaction pulled me right up again, as mothers’ reactions will. She cried, and I found that explaining the reality to her, that people with HIV can lead happy and healthy lives like anybody else, became a source of strength for me. By educating her, I found it easier to understand and process my own diagnosis.

I kept this train going, knowing this was my ticket back to my life, and even a new me. I came out publicly with my status in June, after a couple of months slowly telling those in my circle, who all instantly professed undying support, as I had known deep down they would.

Quickly, my viral load (the level of HIV cells in my body) dropped to an undetectable level (below a count of 50, a stark comparison to my initial 484,000 upon diagnosis). This means there is now no way I can transmit HIV through any means, even sexual contact. My CD4 (white blood cell) measurements currently sit around 29 per cent, which is safe but not ideal, and purely genetic bad luck as my immune system is naturally limper than most. People living with HIV are advised to receive a flu jab annually, and I’ve had mine. If you are living with HIV I highly suggest it, even if only for peace of mind.

After publicly stating my diagnosis, I’ve come to realise that most young people today hide their diagnosis. This led me to start BPlus, an Instagram page and blog designed to educate anybody wanting to listen on the realities of living with HIV today. Later, it developed into a TikTok account which amassed 250,000 views in its first week. That might not seem like a lot, but for me it’s a stark reminder that people want to educate themselves on this topic. I’ve posted videos about how I lost so much weight upon diagnosis, and how I’ve managed to find balance again. I’ve posted videos about my own experiences, and about common myths and stigma, such as how HIV can and can’t be transmitted. I’ve asked people to understand that, while they may never realise someone close to them is going through a diagnosis, it’s likely that they’ve known somebody who is.

Partners I’ve had since being diagnosed have sometimes been hesitant to engage physically with me, but I’ve found that the best route is education and allowing somebody to take their time without pressure until they’re comfortable. It usually helps when I tell them how many thousands of people have been involved in studies that have led to the resounding conclusion that somebody who has an undetectable viral load and is on effective, consistent medication cannot pass HIV on. The science right now behind understanding and preventing new HIV transmission really is nothing short of a miracle. 

With prior education, it’s most likely I would not have HIV today. Teaching on the subject is sorely lacking in our schooling systems, despite the fact that the epidemic continues to thrive. This neglect of crucial history breeds stigma when we’re presented with something that makes us uncomfortable. Today, I don’t see being public with my diagnosis as anything other than ordinary, but at the time it was a monumental step. It felt like the door into a new life, a better life. I live with HIV so confidently that I do not hide any more; I feel no shame for catching it, because all I did was have unprotected sex and I know I’m not the first person to be in do that. I used to think of it as bad luck: of all the guys online, I picked that one. Now, I see it as a rebirth.

“I live with HIV so confidently that I do not hide any more; I feel no shame for catching it, because all I did was have unprotected sex and I know I’m not the first person to be in do that. I used to think of it as bad luck. Now, I see it as a rebirth”

HIV forced me to turn my gaze inwards, and address my own toxic behaviours. It spurred me into a journey of self-discovery through diet, fitness, friendships, and career growth. I became a source of education for my family and friends, and soon expanded this into BPlus. I’ve found even more support and genuine, lasting friendships since being open about my diagnosis. I’m slowly finding and building a community of younger HIV-positive people scattered across the nation, who felt just as scared and isolated, convincing themselves that they were one of few. We are many, and I’m finally finding a place I’m proud to call home, with strong, incredibly brave people.

Thankfully, new HIV diagnoses among gay and bisexual men in the UK are at the lowest level for two decades. While that is a massive leap forwards, this pandemic is still well and truly alive. Since starting BPlus, I’ve had an endless amount of support and feedback from people who genuinely are interested in learning vital information. I’ve had countless messages from young people who are also HIV positive, and had no idea that there were others like them too. Being able to show them that it is possible to live both happy and healthy is the reason I began the account in the first place and reaffirms why it’s important. Together, with community and education, I genuinely believe we can finally erase the stigma and eradicate HIV for future generations to come.

Jay is currently raising money for Saving Lives UK – a charity combatting stigma and promoting testing for HIV – find out more here