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18 years and counting, by Winnie Ssanyu Sseruma
| Last updated: 07.06.06 |
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 that 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 roller coaster HIV set me on.
The first six years of my diagnosis were the absolute worst, I just didn't know
whether to carry on on to give up on life from one day to the next. Apart from
worring 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 tuberclosis, PCP and
diarrhoea and almost got my wish of dying. However, for someone who wanted to
die, I quickly went the doctor with the on set of symptoms of any
opportunisitic infection, was very clear in terms of explaning the symptoms and
was able to pay for my treatment. I believe that it was because of those
specific steps that I took that I am partly 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, meet and spoke to people living with HIV for
the first time. I started accessing services including support groups,
counselling and anti-HIV treatment. My health stabilised which left me with
enough energy to want to live again.
Ten years on, 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.