Globally, there are 37 million people living with HIV. I am one of them and I want to share my story.
I was diagnosed HIV positive in the summer of 1996, aged 25. I got my diagnosis very early, within weeks of the original exposure. I have never suffered a day of ill health because of HIV, except for an exceptionally severe migraine shortly after infection, which was, most likely, my body “sero-converting” – i.e. starting to fight the virus.
I recall the day I received the news. It left me completely numb, both at the time and for years afterwards. I had no idea what to do with the information I’d just been given. It certainly didn’t feel like I was going to get sick or die anytime soon. I just went back to work at Roots and Fruits, wondering at the back of my mind whether it was even safe for me to be working in catering any more, serving food to people. It is safe, of course, and I knew that even then but it didn’t stop the worry.
Over the years I have been extremely lucky; my body has successfully kept the virus under control by itself for far longer than most people’s. The only impact on my life was a twice-yearly trip to the hospital for blood tests, which always came back with good results. HIV was nothing more than some words and numbers on the screen of my doctor’s computer and the addition of a bio-hazard sticker placed on any blood samples that are taken. (Such a ridiculous policy – as if the lab is going to take different precautions with my blood than they would with anyone else’s.)
All this changed in the Spring of last year, when my consultant raised the subject of finally starting treatment. She did so partly because my immunity – measured by “CD4” cells – was beginning to decline as it does for everybody as a natural part of the ageing process, but more so because the treatment guidelines were about to change. Previously, treatment was recommended only when CD4 cells had dropped to a level that indicates a risk of HIV-related illnesses. The new guidelines are based on a study that showed that early treatment, regardless of CD4 levels, gives massively better outcomes. The trial’s findings were so compelling, in fact, that it was stopped early so that participants in the control group could be taken off the placebo and started on treatment as soon as possible too.
For me, this felt like a huge blow. Starting treatment was a one-way door I didn’t want to go through. Having to take pills on a daily basis would give me a constant reminder about HIV. And it felt like a failure… the loss of my “medical miracle” status. I had fears about side effects, about whether I’d be able to adhere to the treatment, and what problems the drugs might cause to my wider health in the long term. However, after studying the research and talking with the amazing team at the clinic I decided it was the right time to start. I took the first dose on 24 June 2016; the day after the Brexit vote. My mood about that result very much matched my mood about starting meds!
The reality of being on treatment turned out to be very different though…
Firstly, the meds worked almost immediately. Like virtually everyone on treatment, the level of virus in my blood is now so low it’s undetectable, which means the virus can do no more damage. The meds work by blocking the process by which the virus takes over the body’s CD4 cells and converts them into HIV factories. By interrupting this process, HIV can no longer replicate itself and almost disappears – although it still hides out in lymph nodes and would come back if I stopped medication.
Being undetectable also means it is impossible to pass on the virus. Let me repeat that… it is IMPOSSIBLE for me to transmit the virus. No ifs, no buts.
The science is absolutely unequivocal and even the most cautious clinics now agree that U=U (undetectable = untransmittable). This is huge. It’s huge for public health, in that we now have a real chance to stop the epidemic by encouraging people to get tested and on to treatment. But it’s also huge for individuals like me, both physically and emotionally.
Becoming undetectable has lifted from me a burden of shame that was so overwhelming and suffocating I can’t believe I never had conscious awareness of it until it was gone. I used to worry if friends gave me their baby to cuddle, just in case it chewed my hand – like babies do – and maybe, just maybe, there’d be a tiny nick in my skin I hadn’t known about. Or if I cut myself when cooking I’d feel like the whole meal would need to be binned, even if no blood had touched the food. Before I became undetectable I felt dirty, guilty, shameful and unlovable. Worst of all, I thought I deserved to feel that way.
Over the past 18 months I have finally started to face up to the reality of having HIV. I have realised that the numbness I felt for 20 years was, in fact, my inability to deal with the enormity of the diagnosis. Ironically, the fact I didn’t need treatment compounded this because it enabled me to remain in a state of emotional denial. It seems incredible to me now (given my penchant for navel gazing!) that I could have been so disconnected from my feelings for so long.
And now? Well, life just gets better and better. I have never been happier. I have never been nor felt so well. I have never been so deeply content and living in the present. I have never felt so secure in my relationships and so connected to my friends and family. The constant low-level tiredness that I had grown so accustomed to has disappeared, now my body no longer has to fight this virus every single day.
And I feel so lucky and grateful. Lucky that my body was able to fight by itself until the meds got as good as they have. Grateful that I live in a country where high quality healthcare is free and available. Grateful that I have good support from people around me. Lucky that I haven’t even had the mildest side effects from treatment. Lucky that I can afford to live and eat well and take care of myself. The list goes on and on.
A few weeks ago I trained to become a peer mentor to support people newly diagnosed with HIV. The stories that others in the group shared were humbling and moving. Myopically, I had always thought of HIV as a gay issue. I had never considered what the experience would be like, say, for a straight man who lives with the complexities of having what has been stigmatised as a “gay disease”. Or a woman diagnosed during pregnancy and had to face her own mortality at the very moment she was bringing life into the world. Or a middle-aged woman who became HIV positive after sleeping with just one man following the end of a long-term relationship. Or the people who were diagnosed because of a late-stage illness, just weeks or months away from dying, were it not for today’s treatments. Or the people who don’t tolerate the drugs as well as I do and have to cope daily with unpleasant side effects. These are just a few of the stories I heard.
I came out as gay when I was 16. I believed fiercely at the time – and still do – that stigma, prejudice and misunderstanding can best be overcome by simply living life openly and without shame. Today, with this post, I am starting to apply those same principles to HIV. I am no longer ashamed of my status. Recently, I’ve started to disclose to more people and I’ve realised that with every person I’ve told, another layer of shame has lifted.
From now on I intend to live openly as someone with HIV in order to help break down fear and stigma and to educate people about the virus. Fear, stigma and ignorance stop people getting tested, but getting tested and getting on treatment early is the best way to both save individual lives and prevent the spread of HIV. PrEP (a daily drug that acts like a vaccine against infection) is widely misunderstood – and not just by the right-wing media. It needs to be made available as soon as possible, without pitting patient against patient.
Today, we have a chance of defeating this virus and this is me, standing up to play my part.