This is the real-life story of Steve Cummins, a member of OUPride, who has been diagnosed as HIV+:
What do you think of when you hear ‘HIV’? What does the face you see look like?
For me, I’ll be honest, it was those ‘Red Nose Day’ videos, and so I never imagined that one day it would be my face, but over fifteen years ago that is exactly what happened.
I contracted HIV at 19 and was formally diagnosed four months later after a routine test. I contracted the virus from a guy I’d been dating. It turned out he’d had HIV for a long time, but hadn’t shared that information, which would have been fine, disclosure is a personal choice. The issue was that he was wilfully and maliciously infecting others by purposefully puncturing the contraceptives we fastidiously used. While I believed that we were always careful, the outcome was already decided.
I have always been open about it, and told my friends, lovers and employers the truth. In part, this is because I want to make sure they are as informed as I wished I had been. More than that though, my opinion has always been that if I don’t talk about HIV or AIDS, if I try and keep my HIV diagnosis the secret, people will think that there’s something about it that I need to hide.
By accident of birth there isn’t. I was born in a country where health care is free and the medications you need to control the virus and keep you alive are given to you. This means that if you test positive, as long as you test early and start treatment, you can expect to live as long as someone without HIV and not just live, but have a life.
Initially of course I was angry and for a long time I turned inward, but through it, I learnt about my inner strength. Of course though, HIV isn’t all about me.
One of the issues with writing a blog like this and indeed in general when living with HIV and needing to manage a drugs regime is that, at points, it can start to get a bit… ‘all about me’.
This is not of course the reality. When an HIV diagnosis is made it impacts on the people around you. Those closest to you must also deal with the news and the implications, particularly those with a close physical relationship with you.
With this in mind, over the years, I have asked others for their recollections.
My sister was able to remember exactly where she was when I called her to tell her I’d been diagnosed as HIV positive. It was an unremarkable midweek morning at work. When I called and broke the news, she was wandering round her work’s car park with tears streaming down her face. Why was she so upset? Everything she’d ever heard about HIV had been distinctly frightening. She worried about my health and thought I was going to die sooner rather than later. She believed HIV was something that happened to other people, not our own family.
Mum’s head span, she felt panic, what should she do? How could she make this go away? All the thoughts any parent has when their child is suffering.
Dad’s first reaction was, as a parent, that he had failed in keeping his son safe. He still feels some guilt that he was not able to prevent it and believes that sexual health issues should continue to be discussed openly to ensure that ignorance is overcome. He was also able to remember as an insurance underwriter in the early 1980s that anyone with HIV would have been refused life assurance and effectively faced a death sentence.
After the initial shock however, their attitudes changed pretty quickly. We are so lucky to live in an age where we can quickly and easily access reliable information and in which HIV treatment has developed significantly. As they each learnt more, it was a great relief to know that people with HIV can live as long as any other person and that my day-to-day treatment could be managed with pills.
On the subject of pills, while writing this blog, I saw one of those chain posts that pop up on Facebook every now and then. It asked which pill would you take if given the choice between a red pill which would restart your life at age 10 with all the knowledge you have now, or a blue pill to jump to 45 years old with £50 million in the bank. I had to think about it for a moment. To be honest, I was thinking about what I’d do with £50 million.
The more I thought about it though, the more obvious the answer became.
Neither. We can never go back.
If I had the chance to revert to being 10 years old, knowing everything I know now, I would not do it. If I did, if I went back, what kind of life would it be?
Knowing what’s coming, I think, would be very dull. This surprises me as much as it may do you. There have been plenty of times I wish I could have known what lay around the corner, but if I had, would I have done certain things? Would I have made certain choices? Inevitably not.
So, to know, at 10 years old, what was to come, would lead me down a very different path and if I did that, who then would I be?
I have been made by my experiences and my discoveries. By charging through my life, and learning, as we all do, by making a series of perfect mistakes.
If I knew what those mistakes were in advance, which would I avoid? More importantly which would I allow myself to make all over again just to feel that rush of excitement and exhilaration?
If I never made those mistakes. I would simply have made others and, fundamentally, I would not be me.
At least, I would not be me as I am today. I may not have HIV. I may never have found my way here, to be writing these words. So no, we cannot go back. There has been too much life that I wouldn’t want to miss the chance to live.
To mark the ten year anniversary of my diagnosis, I went to live and work in South Africa in rural communities, supporting HIV education and healthcare programmes. It was one of the greatest experiences of my life and whose to say, if I hadn’t been diagnosed, would I still have gone? Or has being positive given me more drive, more of a will to live?
So what about jumping forward to 45, skipping the next nine years with a juicy bank balance?
No. I would not do that either, because I have come to realise that I have a responsibility.
The realisation that my HIV is now nearly 16 years old means a great deal to me, partly because I know how lucky I am to have access to treatment that has kept me healthy and alive for that period, and partly because it remind me of all of the shoulders on which I’m standing. People who should be here, but aren’t. Hundreds of thousands of people who, with access to the medication I have, would still be here. I’m carrying on for them. Why would I miss the adventures, the good days that fill me with joy, that bad days that help me learn something new about myself, or even just the chances to stop and smell the flowers, feel the rain, look up and see the stars, or share a kiss with a lover?
I have accepted that my life is worth living and I’m not about to give any of that up with either of the time jumping tablets.
I already take three pills a day. Two yellow and one blue and they enable me to carry on and live my life simply as it is.
I may never know what’s coming and I can say, with some certainty, that I will probably never have £50 million in the bank, but I get to enjoy my days as they come, living, loving learning, making mistakes, fixing them, celebrating and always growing.
What, then, would I change? That is a significantly easier question. I would stop the stigma that still surrounds HIV. I would remove the assumptions that are made of people with HIV; that we are promiscuous, stupid or out of control; that anyone without HIV is morally superior.
I would challenge the belief that it is somehow acceptable to say to someone with HIV, that ‘you should be publicly executed’ which happened to me, or, as happened to a friend ‘40? You look like 60. Guess HIV really does f**k up your body, even with the pills’.
What alarms me the most, is that these messages came from other gay men.
With messages like these, is it any wonder people with HIV often feel unwelcome in their own community?
Each stripe on our flag represents a different group, though we do not yet live inclusively. Each group could benefit from further diversity and inclusion within and amongst ourselves, particularly including older gay people.
As we are all living longer, a gay community which focuses on youth risks isolating its older members. But if a community that fought for tolerance, acceptance and support can stand together, with all it’s component parts, support each other and live those values within itself, we can be stronger.
This World Aids Day, as we come together again to remember those who didn’t make it, but who fought against stigma and stood up for equality, we say thank you. Perhaps though, the best way to say thank you, would be to live those values ourselves.
For more information on HIV and Aids there are good resources to be found here:
*This article previously stated that the student was anonymous. Steve has requested that this be changed and that he be named to demonstrate that living with HIV is nothing to be ashamed of.
The tablets taken each day