I will always remember how I felt the moment I was told of my diagnosis as HIV-positive. It was 4 July 2016, and I thought that was it for me. I thought I was a risk to others, and on a countdown to death. I’m not alone in those views – a new survey shows nearly 40% of the public would be uncomfortable going on a date with someone on effective HIV treatment. And one in three would be uncomfortable giving first aid to someone living with HIV, even if they are on effective treatment.
Now I know that I – and everyone else who believes this – could not have been more wrong.
A year ago, I was terrified and anxious that I could, and would, infect someone. Meeting a new partner was now out of the question. With every action I took, I though about every possible scenario that could result in me injuring myself. The thought of seeing my own blood terrified me to the core.
I thought my doctor wouldn’t be able to help me any more, and dentists wouldn’t be able to treat me. All because I thought I was walking around being “infectious”.
Being around people was one of the hardest things to cope with, especially my nieces and nephews. They know I am a big kid at heart, and as normal they kept running up to me wanting to play, but I kept finding myself putting them at arm’s length and saying: “Not now.”
I began to do a lot of research on HIV and came across articles mentioning the word “undetectable”. It was not a cure, but this seemed to be a light at the end of the tunnel: effective HIV treatment controls that suppress the virus, so the traces of HIV in the blood can no longer be detected.
The recent Partner study – which looked at 58,000 instances of sex without a condom between couples where one was undetectable and one was HIV-negative found not a single transmission of the virus. Zero, out of 58,000. This proves that if you are HIV-positive and have an undetectable viral load, you are not infectious and can’t pass on the virus. It has taken 20 years, but the scientific proof is here.
Getting to “undetectable” became my goal. I remember my very first tablet – there was so much power in such a small thing. I knew it would not only save my life, but would also protect the people around me. I felt suddenly like I was back in control again. Just two months after my diagnosis, I went for my “viral load” test, to find out if the treatment had been effective. I could feel my stomach twisting.
“I have some good news for you,” the doctor said. “The results are back and they show your viral load is not detected.”
I had just been handed my life certificate. I went straight to my sister’s house to show her. I gave my niece and nephews a massive cuddle and rolled around the living room wrestling them, just like I’d always done before my diagnosis.
Before these results, my family all knew about my HIV status, and we all tried to be “normal”, but we all had our own fears – the “what ifs”. With these results in front of them, you could feel the atmosphere shift. There was relief.
I am still adjusting to being HIV-positive, that I cannot lie about. After all, as a gay man, my brain had been trained from a young age to fear HIV. But now, as an HIV-positive person, I know that it’s us – the people who are diagnosed, and know they have the virus, but are on medication to suppress it – who are the people taking precautions to end HIV transmission. We don’t want to, and can’t, pass on HIV.
Now I know I’m healthy and can’t pass on the virus, I’m enjoying every moment life brings. But there are going to be many challenges I have to face, because the stigma has not gone away. People fear HIV because they don’t understand it. I know that all too well. That was me not that long ago.
I’ve become a volunteer speaker in schools and colleges, giving talks on what life is like being a HIV-positive person. People say I’m brave being open about my status, but it shouldn’t have to be a brave thing to do.
I’m not a risk and there is no need to treat me any differently. We need to get this message out to the people who aren’t getting tested, who are living with undiagnosed and untreated HIV, simply because they’re too afraid to know. Currently one in seven people living with HIV in the EU doesn’t know they have it, and can therefore still pass on the virus. If we removed the fear, we could stop HIV transmission. It’s as simple as that.
The Terrence Higgins Trust is starting this process through its Can’t Pass it On campaign: people on effective treatment can’t pass on HIV. I tested, I’m on effective treatment, and I can’t pass it on. This is my journey from diagnosis to undetectable. But my journey to stop HIV stigma is only just beginning.