Living well with HIV starts with knowing your status

I’m an HIV Peer Support Worker at George House Trust, a role I’ve been in since May 2025.
This National HIV Testing Week, I’m sharing my lived experience — not just to tell my story, but to explain why testing is important, and the difference peer support can have on someone’s journey with HIV.

I was diagnosed with HIV 16 years ago. At the time, I didn’t expect what would follow. In those days, people living with HIV didn’t always start treatment straight away, and after my diagnosis the doctors thought I would stay healthy and well for some time before I would need to start taking HIV medication.

Unexpectedly within six months, my health deteriorated rapidly and I was diagnosed with Kaposi sarcoma, a very rare type of cancer that only affects people with a poor immune system. Very quickly, I went from managing a diagnosis to fighting for my life.

Over the next 18 months, I underwent intensive treatment, including aggressive chemotherapy. My body went through enormous trauma. I experienced multiple episodes of pneumonia, severe fluid retention, extreme weight loss, hair loss, and a complete loss of appetite. Eventually, I became so malnourished that I had to be fed through a tube. At one point, I was told that if I didn’t respond to treatment soon, I would likely die — not directly from cancer, but from organ failure caused by malnutrition.

While all of that was happening physically, something just as serious was happening emotionally.

I felt completely unable to tell my family that I had HIV — or that I had what was then called AIDS. The fear of stigma, rejection, and frightening the people I loved felt overwhelming. I didn’t know how to have that conversation, and I didn’t feel safe enough to try.

On medical advice, I told my family that I had non-Hodgkin’s lymphoma. I maintained that explanation the whole time I was critically unwell. The only person who knew the truth was my partner, who was incredibly supportive and became my sole emotional anchor.

Living with HIV wasn’t the only challenge. Living with secrecy, shame, and internalised stigma was just as damaging. I was surrounded by people, yet completely alone with the truth of what was happening to me.

Looking back now, one of the things that stands out most is the absence of peer support. I didn’t have access to someone who had been there before — someone who understood the fear, the stigma, the silence, and the weight of disclosure. I often wonder how different that period of my life might have been if I’d had a peer worker to talk to — someone who could have reassured me, normalised my fears, and helped me find the confidence to be honest with my family, if and when I was ready.

That experience is the foundation of the work I do today.

At George House Trust, I work as an HIV Peer Support Worker because I understand, firsthand, that HIV is never just medical. It’s emotional. It’s social. It’s about identity, relationships, and fear of rejection. Many of the people I support are carrying the same worries I once carried — about disclosure, stigma, and being seen differently.

Because of experiences like mine, nowadays people diagnosed with HIV start treatment straight away, and can expect to be undetectable within six months and live healthy lives. Whilst the initial months were difficult, I’m glad I found out I had HIV and eventually could get the virus under control.

In my role, I meet people who have recently taken a test and found out they have HIV, but I can use my own experience to help them manage their diagnosis, and take away some of the worries they have.

Peer support offers something unique. It says, “You’re not broken. You’re not alone. And your feelings make sense.” It creates a space where people don’t have to explain or justify themselves, because they’re talking to someone who truly understands.

My aim in this role is to reduce stigma, empower people living with HIV, and make sure no one feels they have to face diagnosis, illness, or disclosure in silence — the way I once did.

Peer support didn’t exist for me when I needed it most.
Now, I make sure it exists for others.

John shared this story with attendees of Liverpool’s Fast Track Cities+ Pledge 2026 event during National HIV Testing Week.