Beating The Odds

Source: http://blogs.independent.co.uk/2011/02/09/beating-the-odds/ By Winnie Ssanyu Sseruma

Many days I wake up in utter amazement at how good I feel even though I have lived with a life-limiting disease for almost half of my life now. In a few months, I will celebrate my 50th birthday, a milestone I was never supposed to aspire to, let alone reach. This year also marks 30 years since the first diagnosed case of AIDS in Los Angeles, California. A lot has happened since then, it is a good time to do some reflecting and I will start by sharing my personal story.

In 1988, I applied for a health related internship while I was living in North America and I was required to take some blood tests. A couple of weeks later I was told that my HIV test was positive. I was 27-years-old.

To say that I was shocked about my HIV diagnosis is an understatement, made worse by how the devastating news was actually delivered to me. I was sitting in a small room in a clinic and, before the health advisor had even sat down he bluntly announced ‘I’m afraid your HIV test came back positive. This means you are carrying the HIV virus.’ He then stopped and looked at me, possibly expecting me to respond somehow, but all I could do was stare at him. I don’t remember much of the discussion that followed.

Over the next few weeks, I walked around in a daze trying to understand what having HIV actually meant. During the late 1980s, the message was that if you had HIV there was no cure and you were going to die a horrific death. Who got HIV? Well, it depended on who you asked. Some churches even preached that HIV was a punishment from God, so ‘sinners’ deserved what they got. I genuinely thought that I was going to drop dead any day, and sooner rather than later.

None of my friends or family was aware of what I was going through. I was too worried about being judged and about the obvious anxiety it would cause them. The person I felt needed to know most was the guy I was dating at the time. I finally mustered the courage and told him that he needed to go for a test. He didn’t take the news very well, not because he cared about my wellbeing, but more because he was sure that I had infected him. Thankfully, his HIV test came back negative but our relationship didn’t survive. HIV discordance – where one person is HIV positive and another is negative – is a phenomenon that still baffles scientists.

Six years on from my initial diagnosis, I was feeling very isolated and stressed, I was borderline depressed. I had very little emotional support, mainly because I was terrified of anyone knowing about my HIV status and being ostracized further. During this period, I also lost both my parents to different forms of cancer and a 27 year-old brother to a HIV related illness.

Unlike many other people living with HIV at that time however, I was taking one of the first ever anti-HIV treatments, although there was a lot that scientists, doctors and patients still didn’t know about the medication’s side effects. What I most remember happening to me is that I lost my appetite and consequently lost a lot of weight, my skin became ashy black, and so did my toe and fingernails.

In 1994, exhausted and feeling like there was really not much point to life, I returned to Uganda hoping for a quick and painless death. Once there I had to disclose my HIV status to my younger sister. Luckily she was very supportive and told me that she knew a few people who were HIV positive.

After six months with no more anti-HIV treatment I got tuberculosis, followed by pneumonia and I nearly got my wish of dying. With my sister’s knowledge of good private healthcare and the little bit of money I had left, I eventually got the right treatment, but it took me a whole year to fully recover from all the opportunistic infections.

At the invitation of my brother living in the UK, in late 1996 I arrived in London to recuperate and focus on living again – I suppose had grown bored of waiting to die. When I went to hospital, I was diagnosed with AIDS with a CD4 cell count of 1. The CD4 cell count range for a normal person is anywhere between 500 – 1200 cells.

It was in 1996 when the majority of British people living with HIV and with a CD4 cell count below 250 started accessing the new Highly Active Anti-retroviral Therapy (HAART). Although when I arrived in the UK I had no intention of staying, after visiting a support group and listening to empowered and healthy-looking HIV positive women, I decided that I wanted to live again.

After 23 years of living with HIV, I have never felt better. My CD4 cell count is near normal and ARV therapy has suppressed the virus in my body to undetectable levels for over a decade. The last thing I want to do is hide, and just try shutting me up about HIV! I work to help improve the lives of those living with HIV and to raise awareness to stop more people getting infected.

As the world reflects on the 30th anniversary of the first diagnosed case of AIDS, it is important to acknowledge the amazing work that has taken place. It is also equally important not to forget that many challenges remain.

I will be writing on different HIV related issues throughout the course of this commemorative year. The journey continues.

For more information on Christian Aid’s work on HIV and health please visit www.christianaid.org.uk/whatwedo/in-focus/hiv-malaria-health/index.aspx

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