World AIDS Day: Carl's Story

This story - told under the name of a beloved friend lost to AIDS - is a testament to the power of activism, medical progress, and community resilience. But it's also a stark reminder of the generation we lost, and the survivor's guilt carried by those who remain.

When Carl* was diagnosed in the early 1990s, doctors told him he might have ten years—if he was lucky. Today, decades later, his story is one of survival, grief, and gratitude. It’s also a reminder that the progress we celebrate on World AIDS Day was built on courage, activism, and the lives of those we lost.

When you were first diagnosed in the early 1990s, what did doctors tell you about your life expectancy?

I was told if I were lucky, I'd have 10 more years. Outliving that shocking prediction feels like a major success, thanks to friends and agencies who stood by us when wider society shunned us. It is also testament to being skeptical: it was after all a prediction not a guarantee but not everyone saw it that way. But it was still a body blow and there seemed no point making medium or long-term plans.

What was it like watching friends and lovers disappear while wondering if you'd be next?

Those early days were full of fears and tears. There was no medication, no hope, and so many people vanishing. Funerals became our new social spaces, always fraught with wondering who would be next. If you didn't see people for a while, you assumed they might have died. Any cold or cough led to wondering: where is this heading?

When you look at photos from Pride marches or community events from the '80s and '90s, how many faces are still with us?

A significant number are no longer here. This time of year brings that into poignant focus - those people are deeply missed. I'm writing this under the name of a dearly departed friend, Carl, who died of AIDS-related complications just as the medication was coming into use. So nearly there, yet maddeningly gone. His laughter, friendship, and love is forever a memory.

As someone who made it, there's the eternal question: why me? when so many died. I feel it's important to give back - advocating for early testing, adhering to medication, attending appointments. We're living in a golden age of treatment thanks to the NHS, agencies, peer support networks who provide a safe welcoming space where the non-medical realities of living with HIV are sometimes chewed over , and those who participated in research.

Has "survivor syndrome" shown up in your life?

It was more difficult in the past when so many died - the why them, not me? question that torments you in the early hours. But eventually you become numb to it because you're so busy trying to live without tying yourself up in guilt knots. I did talking therapy and came to accept surviving on the basis that you never know what's in store except that change will always happen. Each day is a gift. Change is the only constant - that's my personal mantra.

When I hear music from that time, it invokes bittersweet memories of good times with friends who are gone, and sadness that they're not here to create new memories. But it's vital to remember them.

What has surprised you most about ageing with HIV?

My consultant Martin Fisher told me after a conference that the working theory was HIV-positive men on medication and regularly monitored are likely to live at least as long as men without HIV - because they're having their health checked and have personal awareness, whereas most men traditionally didn't go near medical settings unless something was dropping off.

What's surprised me is that the HIV itself is manageable, it has felt more like a partnership navigating unchartered territory together to find solutions more than any other aspect of healthcare

It's all the other things that come with aging that are problematic - arthritis, sprains, falls, cholesterol, heart health. There's a study suggesting our immune systems never rest, so we're physiologically 10 years older than our biological age.

What do you want younger people living with HIV today to understand?

It's become manageable because we campaigned and came together to enact that change. It hasn't always been like this. A large part of why you can take only one pill a day or an injection intermittently is because those before you did drug trials.

What do younger LGBTQ+ people need to know about what came before?

It was hard to get here and many died along the way. Try to be kind to those who went before you and are still around to tell the tale - who are sometimes angry and hurt about who they've lost.

At this stage of your life, what brings you joy?

Friends and loved ones bring joy. Savouring the buffet of life. Purpose comes from supporting people with HIV and drawing upon years of experience. There are parts of the British Isles I've heard about but not experienced yet - and now there's time to do so.

If you could send a message to your younger self receiving their HIV diagnosis, what would you say?

Never give up. You may lose people, but you will also gain people. Embrace change - it is the only constant.

Carl’s story reminds us that survival is never simple - it’s layered with grief, resilience, and gratitude. On World AIDS Day, we honour those who fought for treatment, those who participated in trials, and those who didn’t live to see this progress. Every pill, every injection, every life saved is built on their legacy.