This is an account of how HIV and Hepatitis C changed my life for the better.
Being told you are HIV positive is perhaps one of the most traumatic, devastating and unnerving events in a persons life. The questions which run through your head, the need to blame somebody else, the feelings of failure and that it is the end. Suffice to say you leave that little room a different person. The ensuing journey back to some semblance of normality can vary in length, though some people feel they will never find any sense of acceptance.
For me, my HIV diagnosis didn't really come as any surprise. I had been engaging in very risky sex and self destructive behaviour for quite a while and though I had been getting tested regularly and thought I was mentally prepared to be told I was positive, the news still hit me like a tonne of bricks. There was no going back and no cure. Something had irreversibly and fundamentally changed in my life. To compound this, 3 weeks earlier, on the day I started my PhD, I had also been diagnosed with Hepatitis C. I knew little about Hep C, only that it was a progressive viral infection that slowly destroyed your liver and that it was something that everybody I had discussed it with was trying to avoid like the plague! Being told I was positive for 2 of the nastiest Sexually transmitted diseases within the space of 3 weeks pretty much broke me.
Unsurprisingly, within a matter of weeks I hit rock bottom, depression set in and I just wanted to give up. My PhD studies suffered as a result and I ended up taking time off. The ensuing cycle of neglecting and isolating myself, coupled with depression and the prospect of the dreaded Hep C treatment regime brought me to a juncture in my life I had never been before. I felt so hopeless, and it was only to get worse.
Hep C treatment has been compared in its severity to chemotherapy. It runs from 6 to 18 months, dependent on what strain of the virus you have and how well you initially respond to the treatment. 3 months into the treatment all of the side effects began to properly kick in. My appetite went out of the window. I felt constantly tired and washed out. My personality began to alter: short tempered; poor concentration; apathy and depression. My studies were suffering as a result so I requested a break. There seemed no point in wasting mine and my supervisors time and energy doing a half arsed job. By the time I had been on treatment for 6 months I had dropped down to 7 stone, the HIV was dragging my white blood cell counts down to dangerously low levels and I was getting lots of opportunistic infections. The decision was made to start me on HIV anti retroviral medication. Without this intervention I don’t think I would have lasted another 3 months. This one pill a day had saved my life. Within 3 months my viral load (the amount of virus particles in your blood) had dropped from several hundred million per ml to an undetectable level! During this time I had also entered into a relationship with a guy. The physical and emotional support he gave me helped me turn the corner and within a few months I was starting to look a lot more like myself.
I will talk more about Hep C, the stigma associated with it, its treatment, transmission vectors etc in future blogs. I feel it is something that needs a lot of attention as a growing epidemic that is sweeping through the gay community across the UK.
By the time I finished my treatment I had taken a considerable amount of time off from my PhD and a lot had changed for me in my perception of what I wanted out of life. The decision to drop out of the course was vary hard and the resulting feelings of failure still bother me to this day, but I know that I made the right decision at the time. I have come out of the other side of this ordeal a much stronger person and feel, if anything, that the lessons learnt and the severity of the journey have given me a frankness and honesty about both who I am as a person and confidence to express my feelings, aspirations and fears. 3 weeks ago I received my all clear results from the Hep C treatment. The sense of relief that it has been a success was unreal but my attitude towards it as a condition has changed dramatically.
So here I am, 2 years on. I look after myself better than I ever did in the past. Go to the gym 4 times a week, drink less, take a lot less ‘substances’ and know my limits a lot better. I am completely open about my HIV status and though you may find it a little ironic, especially if you are a HIV negative person reading this post, the fact that I am positive has made me a much stronger, self aware, compassionate, accepting, impartial, healthy and determined individual. I am not proud of being HIV positive, but at the same time I am not ashamed about it either. It’s not something which is going to go away so as a result I am very positive about being positive and potentially, if I had stayed on the course of hedonism and self destructive behavior I was careering along 2 ½ years ago I really don’t want to know what the outcome would have been had I not have been forced to curb my ways by my status change. My openness has been regarded as daring, brave and by some as reckless but do you know what, I have nothing to hide! I don’t see why I should be scared of the opinions of those who choose to not to understand or live in the 1980’s and still see HIV in the shadow of the “Don’t die of ignorance” tombstone. Treatment, social awareness and positive people have changed a lot since then. I dont see it as my job to bring about awareness but I do feel it is my duty to help bring about a change of attitude towards HIV in both the negative and positive communities. Fear is the biggest enemy in both cases: Fear through ignorance; fear of discrimination; fear of exclusion and rejection; fear of transmission; fear of being judged. But fear can be easily conquered through understanding, acceptance and reassurance and as a result I will never again be scared of either the virus itself or of how I am viewed in the world.