Billy’s story

"I was so busy dealing with the physical side of HIV, just trying to survive, that dealing with the mental and emotional aspect came later"

“I was an extremely late diagnosis. I was given a 48-hour life expectancy because I was in the hospital with double pneumonia. It took them a long time to realise why I was so ill, and I never thought it could be HIV because I was good at getting regularly tested. Of course, I went through a 2-year period where I wasn’t really getting tested because HIV had kind of fallen off the map, and not much was happening – that’s when I would have gotten it.

I was so busy dealing with the physical side of HIV, just trying to survive, that dealing with the mental and emotional aspect of it came much later. I was so ill at the start that I felt I had lost my voice because everyone else was speaking for me, and that was really hard to come back from. I struggled a lot in the years after my diagnosis.

There was this one time that I was walking up and down the Clyde riverside, not in a good place at all, and this woman approached me and started speaking to me. She told me to sit with her, bought me a cup of tea from one of the caravan cafés, and asked if she could take me back to her office. She said ‘I work for the Samaritans, and I was wondering if you would come back with me so we can talk some more and possibly phone somebody from your family’. And that moment saved my life. That woman to me was an angel. I came back from the brink, and everything just got bigger and stronger, and my voice slowly came back.

My family had wrapped me in cotton wool to try and protect me throughout my diagnosis and treatment, and it wasn’t until I started getting my voice back that I realised that I needed to take control back of my life and stop letting my family do everything for me. I felt like the swan gliding on top of the water, but underneath the current was so strong and going rapid, that’s what I think my family were trying to put forward, this front that nothing could touch me.

I was fortunate enough that when I was diagnosed, advancement in treatments had been made, so there was more chance that I could live a normal life, and I do! But it’s not just about the medication in my opinion. You have to look after all the other aspects of you. You have to keep pushing and deal with the mental and emotional side of things. If it wasn’t for the support that I got from Terrence Higgins Trust, God knows where I would be. It’s through peer support groups and the people that you meet that get you through and give you the tools you need to move forward. These people know what you’re going through, and you can be yourself with them, no matter what. That’s how I originally got involved with Terrence Higgins Trust, as a service user, which led to volunteering, sessional work, and now I work at Terrence Higgins Trust full-time.

I really have to tip my hat to those that went before me, because they should be remembered. I’m a gay man, and I remember living in a time where we were essentially illegal. I mean, I was at marches against Section 28 and things like that. Thankfully, a lot of things have changed, but there are still so many misconceptions about HIV. I’ll be honest, the main thing at the beginning for me when I was first diagnosed, was the idea that I would never have sex again. No matter how many times they tell you that your viral load is undetectable, something still niggles at your head. And you need to work on that within
yourself to get to a point of acceptance where you can really take on the facts and move forward. It’s frustrating, because we do have the facts now about HIV, but people still have this old, stigmatised idea about what it means.

I still think there needs to be more education about HIV, even in medical professions. I was in the hospital theatre once and one of the nurses asked to leave the theatre when she realised I was HIV positive. And that’s someone who should know better, you know what I mean? But I’m just a normal guy, and if I can do this, you can do this. We all have the energy and resilience inside to overcome those negative experiences, it’s just being able to find it within yourself and keep moving forward.”

Billy’s story is part of the H is for Human series, in collaboration with the Terrence Higgins Trust, sharing stories of strength, courage and hope from four decades of HIV in Scotland.

For more information on Terrence Higgins Trust and to learn about the work they do, follow this link.

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