Today marks ten years since I was diagnosed with HIV. I celebrate my diagnosis date every year as a way to remind myself to appreciate life, to treasure those who I share the world with, and to take stock of my own personal journey in life and how far I have come. This is my story.
I want to start with the most important message: If a person is diagnosed with HIV and they take their medication as prescribed, and have undetectable levels of the virus in their blood, then they cannot pass the virus on to anyone else. That’s it. There is zero percent chance. There is no theoretical risk, it is that simple. Undetectable equals Untransmittable. U = U.
My story starts in 2014. I was going for a routine sexual health test on my break from work, and what I expected to take half an hour ended up taking 2 or 3 hours. After my “reactive” test I went into a state of shock. I was comforted by medical staff because I thought it was a death sentence. Spoiler alert: It’s not. People who test positive for HIV in the UK go on to take medication straight away, and 98% of those become undetectable - that means they have a normal life expectancy and cannot infect anyone else. Marvellous!
When I look back on that day, I seem so innocent. I was merely a passenger in my own life; experiencing it but not holding the steering wheel. I was 26 years old. I had had my share of life experiences by then. I had moved to New Zealand, and moved back, been to university, and dropped out; I had DJed at venues in England and New Zealand. I partied a little too much at times, I’d had my first panic attack, but I had also discovered the calm that could be experienced through an hour of yoga.
My diagnosis was an awakening of sorts. I thought a certain type of person got HIV; usually bald, usually gay, usually with a thick septum piercing. How wrong I was. I protected myself from HIV by not speaking to or interacting with people who had it. I was so ignorant, so uninformed. So when it happened to me, it was a shock. I went through a grief process. It was the death of the old me and the birth of the new me. It is difficult to put into words what a challenge that was.
I went to my friend’s house on the same day, a Friday, for a sleepover, before another friend was due to get married the next day. I had to put on a brave face that said nothing of the news I received on the Friday. I am not the type of person to hide my real feelings or mask things, so that was a very tough weekend. Finding out that I had an incurable disease was not a challenge I thought I would have to deal with.
I always tell other positive people about those first days. I told my best friend first, then my mum, my dad, my brother and my sister-in-law, and finally my eldest brother. They became my rocks. I would speak to them on the phone, or in person, to start to navigate this new life. I tell people about these first days because I hope that they can see that it can be done, but I realise the privilege of having such a family, one that has been open to the difficulties and realities of life for a very long time, it was a very strong unit.
Not everyone who receives an HIV diagnosis is as lucky as I am. I did not have to fear physical violence, coercion, or sexual violence, but that is the reality for some people in the UK and overseas. Not everyone gets support from their family (chosen or otherwise). What I tell anyone who receives a diagnosis is that it helps to meet other people like you, because talking to others who understand you, without you having to explain in detail how you are feeling, is a blessing. Getting support from people who have faced what you are facing makes the challenge that much easier. They will help you to navigate your new path ahead.
Before taking my first dose of medication, I felt a great weight of responsibility; I would be taking this medication every day for the rest of my life. What I have realised is that the opportunity to take medication every day, and my choice to do so, has allowed me to connect with friends and loved ones who also experience life-changing diagnoses. We don’t have the same diagnosis, but I can sit there and hold their hand and calmly tell them that taking a pill every day gets easier, and we have to do this if we want to live our lives in good health, whatever the condition may be.
Trying to navigate romantic and sexual relationships in those early days was nerve-wracking. When I told the guy I was dating about my news, the reaction over the phone was telling: “Oh god”. Afterwards, he rang me back to offer his support and apologise for being selfish in his reaction; he ended up being negative and went on to support and help me to raise money for Positively UK, a London-based HIV charity, and showed me some of the best in humanity. Others were less understanding; after I disclosed my status to a guy I’d made out with ferociously on a first date, he unceremoniously dropped me, saying he had “dodged a bullet.”, I now realise that I dodged a bullet too.
One of the first people I met when I attended a newly diagnosed workshop was Marc Thompson. Marc had the best attitude with regard to his HIV; if you couldn't deal with his HIV then he wasn't there to educate you. His life was too full to have to deal with anyone else’s bullshit. I listened to him in awe. I was so far off having that mentality, but I’m there now. I don’t have to educate those who want to be ignorant when faced with the scientific truth of living with HIV. I do educate though, similarly to Marc; I share my story in the way I choose.
Now that I understand more deeply the historical challenges our community faced in the 1980s and 1990s, I think we have a huge debt to repay to the older generation. The complacency of living as a gay man in a post-HIV epidemic world can make us ignorant to what others faced. In being this way, we do a dishonour to all of those who died. I have spoken to men in their 60s in the US and the UK and they tell me they went to 50 or more funerals before they stopped going; they were in a war against a virus that took all of their friends and they could do nothing about it. These days we can take a pill, PrEP, that can prevent HIV-negative people from acquiring HIV, and yet some people still choose to stigmatise and swirl in our ignorance about the reality of HIV in 2024. A recent study showed that two-thirds of people living without HIV would not kiss someone who is living with HIV. HIV cannot be transmitted through kissing.
I personally cannot transmit my HIV to anyone else. I am undetectable. Undetectable equals untransmittable. Undetectable people live as long as their HIV-negative peers. In some ways, HIV-positive people are probably healthier than HIV-negative people due to the twice-yearly checkup at the doctor. HIV-positive people get world-class clinicians who support them. But it’s not all easy breezy and clear sailing.
There are still conditions which affect people living with HIV, and they are often exacerbated by the alienation and stigma often felt by people living with HIV. When they can’t speak to their children about their HIV, their siblings don’t know, their parents don’t know, it creates distance between the authentic “them” and the person that people know. It alienates HIV-positive people from the closest people to them. So they drink more, they smoke too much, they get depressed and anxious, they forget their connection to the natural world, they eat too much and don’t exercise, maybe they develop diabetes or osteoporosis, or any other issues associated with long-term HIV. But it shouldn’t be this way.
All HIV-positive people want is to be loved, to be held, to be accepted, to be truly seen for who they are. Usually, the virus is the least interesting thing about them. They are, as we all are, complex beings with aspirations, goals, dreams, and needs, and HIV intersects all of this to make life a little bit more challenging than it already is. And that is what needs to change.
Over the years, for me, it all got easier, and that is something else I share with positive people that I speak with today. The challenges we face today are just minor considerations in the future. I have gone through the process of telling friends, lovers and partners so many times that I have developed the language and my approach to the minimal effort I think it deserves. If they respond well, then I bring them in closer.
I told my current partner by text message after our first date. He was terrified but he didn’t show it. He has learned so much and is now my greatest supporter.
The HIV community is a lovely diverse collective; we advocate for ourselves and each other, we share deep secrets and connect very quickly. The last ten years have given me many opportunities to meet so many beautiful and brilliant humans, all because of HIV. I have met mothers experiencing hardship, asylum seekers who just want to get on with life and work, 21-year-olds who are facing challenges I wouldn’t wish upon anyone, people struggling with drugs and alcohol, regular older gay men who knew it was only a matter of time before it happened to them. Through all of these differences our HIV has joined us and we celebrate each other, with love, respect, humility and companionship.
So, would I change my status if I was given the choice?
I have become part of a community which is loving and accepting. I have worked on photography projects, received 1-to-1 support from others, and supported people too. I visited UCLA in California to see a project I was part of on display in their museum, I helped with research to understand the impact of COVID-19 on the HIV community, and more recently I became a trustee for BASHH (British Association of Sexual Health and HIV), and countless other accomplishments. I would not be the person I am today, nor would I have been afforded the opportunities I have taken or made, if I was not HIV-positive.
So no, I would not change my HIV status. HIV is part of who I am today: an HIV-positive man who strives to help others. I would not change any part of that man, including my HIV status.
