Living with HIV

NAM produces a resource called Living with HIV – it provides introductory information on the key aspects of living with HIV.

Living with HIV includes first-hand accounts written by people with HIV about their experiences.

This edition of HIV Weekly reproduces two of these.

There have been two print editions of Living with HIV. There are no copies left of the print edition, but it’s still available online and NAM will soon be launching a new Living with HIV website.

If you’re HIV-positive and live in the UK and would like to write about your experiences of HIV for online publication, then email michael@nam.org.uk.

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 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 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 the doctor with the on set 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 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, met 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.

Just diagnosed

I was given my diagnosis over the telephone after spending four days in hospital with meningitis. I now realise it wasn’t meningitis, it was an HIV seroconversion illness. I literally couldn’t get out of bed one day and ended up in A&E. I was terrified and alone and I asked if it could be HIV. The ward was overcrowded and no one saw me for three days after an initial consultation except the nurse who told me nothing. Then I was discharged.

I don’t know why, but I knew that couldn’t be the end of it. I went for an antigen test.

After the initial shock of being told that I had HIV over the phone by a doctor, I was in a daze for about a week. I didn’t know where to go or what to do. I just sat there most days, not knowing how to go on and wanting to hit out because it was so unfair; it’s not fair for anyone.

After being told I would have to be retested before I could get a place in a clinic, I nearly broke down, I knew I was positive and didn’t want to go through more tests.

Then I got to speak to an amazing senior health worker and things started to change. I left with an appointment to see a consultant and a smile for the first time in weeks.

My blood results were erratic as to be expected and I’m still waiting for them to stabilise, fingers crossed, but I knew all that and I expected it. What I hadn’t expected was the anxiety and panic attacks, the nightmares I had and the lack of breath. It took a while for me to calm down about it and I am not usually an anxious person. These were totally new experiences to me and I was finding it tough. Combined with the dermatitis, fatigue and continual stomach bugs I experienced, I felt like I was falling apart.

I’m not saying all this to cause worry; I’m saying all this because if I’d have known to expect some of this, it wouldn’t have been so hard. Jumping hurdles is easier if you can see them.

It’s been seven months now and for the first time I’m actually feeling okay about it. Obviously I still worry about things, particular the future, I never felt so mortal before and my long-term health still concerns me, but I feel ok.

I feel ok because I feel like I know what to expect now. I have a different outlook on things. I feel better for knowing my status and I’m making so much more of my life than I was before. I think about where I’ll be in 15 years, not in a bad way, in a good way, I want to have done something.