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Thursday, 15 March 2012

30 years: How much have we moved on?

I have recently been to London to do a photo project for the 30th anniversary of HIV being officially recognised. 30 positive people being photographed doing everyday things. 30 things which are poignant moments on their journeys with HIV. Myself, I chose to document my journey to and from the clinic. I was photographed on the top of a bus. The experience of being photographed on an empty top deck of a double decker bus was both exciting and exhilarating. People on other busses and on the street were looking and pointing with curiosity. I will admit, I am more than a bit of a show off. But thinking of what this photo session was for, remembering what it was symbolizing for me did touch a few raw nerves inside. I have been asked to write a short statement to be displayed below my photo in the exhibition. Here is what I have come up with: 

“Something had changed that day on the bus. It was the same driver who had taken me and brought me back, but I was not the same passenger. Over time you learn to accept the virus as just a simple fact of life, but the journey HIV takes you on is one of segregation, guilt, secrecy and depression. But it’s not all bad. My journey is also one of hope, family, community and strength. I am rediscovering myself as a consequence of HIV. I openly share my experiences online.  I volunteer my time to help those elsewhere on their journey and I never again feel I need to hide because of who I am or what I have. I have a wonderful partner, fantastic children and amazing friends. Without these things I would not have made it to where I am on my journey. HIV is something we must fight together, not on our own.”

This journey had been one of great anxiety, and symbolised a great change in my life. On my way to the clinic I had felt the same as everybody else on the bus. On my way back I felt fundamentally different. I was no longer just me. I was now me plus something else. This was the first feeling of alienation that I had experienced from my status change. If I, as a positive person could feel such a strong feeling of difference and change so early on into my life with the virus then is there any wonder there is so much stigma attached to being HIV positive. 

Personally, I had felt uncomfortable and awkward around positive people back in the early 90’s. I had felt fear and anxiety when watching films like Philadelphia and when hearing of the Freddie Mercury’s and Kenny Everetts succumbing to the virus. But I thought I had rationalised my fear in the ensuing decades. I thought I had stopped seeing HIV as something to be scared of. I had educated myself and mixed with many positive people. However, in this instance, I was discovering than being forewarned is not necessarily being forearmed. I had now discovered that the reality of being told you yourself was HIV positive was very different. Nothing could have prepared me for these feelings. My mind was racing and yet, at the same time I felt utterly numb. This was November 2009. This was a time in the history of the epidemic where there was so much hope. There was so much support. There was so much medical knowledge and yet I still felt like I had been given my death sentence. So many people had been through so much. So many had lost their lives. So many had suffered, been shunned, been rejected, been left to die alone. HIV had been wreaking havoc across the planet for over two and a half decades but only now was I truly understanding the stark reality of it. I was now part of that statistic.

This number, 30, the more that I think about it the more upsetting it is. For over 30 years people have been dying from this virus. For over 30 years people have been living in fear of social stigma. Living in fear of rejection. Living in fear of prosecution. In the UK, HIV is now seen as a chronic illness. Something that is treatable. I am more likely to die of lung cancer or terminal boredom from atrocious daytime TV or from fast food fuelled hardening of the arteries than I am from HIV. The mortal implications of HIV in the west have waned now. We are more impacted by the social and psychological impacts of living with the virus. This fact is because of medical technology. The marvels of modern medical science are keeping us alive. Keeping us with our loved ones. But they are also keeping the pockets of large pharmaceutical companies very well lined. HIV is big business! 

Don’t get me wrong. I am not ungrateful. I think that modern treatments for HIV are amazing! They are serving to not only prolong the lives of those living with the virus but also halt any further spread of it. Treatment is now seen and is being adopted as a very credible and effective strategy in the fight against the spread of HIV. You see, if your on medication (MEDS) then it works by stopping the virus from being able to replicate inside your body. After a short period, usually several months, your body cleans up all the free virus in your blood stream. This is not a cure! Effectively you still have the virus hiding inside your body, but there is little or no free virus floating about inside you. This has 2 major consequences. Firstly, you are no longer under constant attack by the virus and so your immune system is no longer stressed. Secondly, you have no virus to be passed on, making you effectively non-infective. The term as an infection control strategy is called TAP (Treatment as prevention). Here in the UK, treatment is free. Technically you will have to wait until you have had HIV for a while before meds are offered but in theory you should be able to ask to go onto meds as soon as you are told you are HIV positive.  It is a big decision as you will be on meds for the rest of your life, taking a pill (s) every day, but the sooner you begin the less long term damage there is to your immune system and the less likely you are to pass on the virus. 

Sadly, this is only the situation in a handful of countries. HIV treatment is not freely available everywhere and in many places across the globe it is still very much a terminal disease. There are still places where I cannot visit because of my status. There are still places where HIV is seen with revulsion and hatred and fear. Here in England we are taught to accept and not judge. To overcome difference and segregation and bigotry. We pride ourselves on this. But this has only arisen as a result of our developed government, health service, educational standards, secularism and welfare state. It is easy for us to have our perceptions blurred by the bubble of our own making, looking out onto a world of suffering, hunger and disadvantage. I would like to think that in the next 30 years HIV will be a thing of the past. An episode in our history which we have leant many lessons from: medical, moral and social. But going off the way I felt when I found out about my HIV. Going off how HIV is still affecting disadvantaged parts of the world. Going off the relative price of HIV medication and the current state of the worlds economy. Going off the promotion of criminalisation of HIV in European countries such as Sweden and Norway. Going off how new cases of HIV in the UK are increasing in numbers year on year I cant help but feel that things are going to get worse before they get better. 


  1. An excellent explanatation of the "test and treat" approach. When HIV was first discovered, the medics discovered the futility of tell injecting drug users "no more smack" and did damage limitation by giving out free works as and when needed. Now we're in a position where "test and treat" could make a real difference to quality of our sexual lives. The next challenge is to get the 26% of people who don't know they have HIV into the clinics...

  2. Another amazing blog, so truthful and to the point, l love reading what you write.