An emotional rollercoaster

If someone would have told me that I would be alive 18 years after my HIV diagnosis I would not have believed them. As I write I am two days away from my 45th birthday, far older than most people in African countries now expect to live.

I could never have imagined my life after my HIV diagnosis, but it continues to amaze me. Unlike many people living with HIV, I do not particularly remember the day I was diagnosed (maybe I blocked it out), but I just know that what I totally underestimated is the emotional rollercoaster HIV set me on.

The first six years of my diagnosis were the absolute worst, I just didn't know whether to carry on or to give up on life from one day to the next. Apart from worrying about my health there was so much else going on with my family that it was hard to concentrate on myself. I was living in the US on my own and my whole family was a long way away in Uganda. I lost a brother to HIV and both my parents died from different forms of cancer never knowing about my status. I feel it was a blessing in disguise for me because at the time, I didn't feel it was an option for me to tell them.

When I left the US to go back to Uganda in 1994 it was simply to die because I was mentally and physically exhausted and could not see a way forward. I was so depressed and utterly desperate, but received no official diagnosis for my depression. After six months in Uganda, I fell ill with tuberculosis, PCP and diarrhoea and almost got my wish of dying. However, for someone who wanted to die, I quickly went to the doctor with the onset of symptoms of any opportunistic infection, was very clear in terms of explaining the symptoms and was able to pay for my treatment. I believe that it was partly because of those specific steps that I took that I am alive now.

In 1996, I moved to live in the UK for the first time, even though that is where I was born. My mental state was still very fragile and I was not sure whether I wanted to start a new life or let nature take its course. Moving to the UK energised me as I saw, met and spoke to people living with HIV for the first time. I started accessing services including support groups, counselling and HIV treatment. My health stabilised which left me with enough energy to want to live again.

Today, I have never felt better about myself. The biggest challenge I face is pacing myself. I usually fail miserably. Many times I forget I am living with the virus even when I have to take my medication. There are a number of things that have helped me focus on living a full life again, apart from those that I have already mentioned. Remaining active with work, constantly networking and travelling have all kept me quite sane. I do not have time to feel sorry for myself. Being openly positive and knowing that I do not have to hide my status from anyone has been incredibly liberating. The wisdom that comes with age, feeling comfortable about oneself and not worrying about what anyone else thinks has had a huge impact on my life.

I have never looked back to ask questions like 'why me?', I am totally at ease with myself. It is an amazing feeling given what many people think living with HIV is or ought to be.

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The bus of doom

By Caroline

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