Living with HIV: ‘There is nothing to fear’

After losing his parents to Aids in 1992 Wilson Bukenya was adopted by his maternal aunt, who lived in Denmark. Today the 24-year-old is fit, healthy and studying political science. On International Aids Day, he tells us about his life with HIV.

I was born with HIV in Uganda. Both my mother and father died of Aids because they couldn’t access treatment. Immediately after, my mother’s sisters took me to Denmark so that I could access medication and maybe live. I was two years old.

I was very sick when I arrived in Denmark.

After I got better, I led a normal life growing up. I didn’t know that I had HIV until I was 12. 

I’d gone to the hospital for a regular consultation and there was a new doctor on duty. He made a mistake by showing me a card that revealed my status. That’s how I found out that I was HIV-positive.

I remember being very sad when I found out. I was shocked.

I couldn’t hear anything. I was very sad. I was at the hospital with my aunt and after some time, I left her to go and see some friends. On the bus, I was listening to music; I remember it was that song by Eminem featuring Elton John, Stan. As I listened to the song on the bus, I started crying. I thought I was going to die.

When I met my friends later that day, I told them that I was HIV-positive and that I was probably going to die.

Soon, people at school started talking, and the word just spread. It was hard for me. Many people started to keep some distance from me; they didn’t want to talk to me or sit with me, they were scared of getting infected.

It was a very, very hard time for me.

I would say the stigma is something I have battled with the most. People thought they could get infected by just being around me. Even in a place like Denmark, people seemed to know so little about how the virus spreads.

At one point, I actually had to show people booklets to make them understand that you cannot get it by sitting next to me.

When I was 14, there were a nurse and some student leaders who tried to get me to join a group made up of young people with HIV. It was like a support group. I refused. It took them two years to change my mind. So when I was 16, I joined the group (called Ungegruppen/Positive Youth) and it has been great. I realised it was about educating others about stigma, about prevention and care. It was about making a positive contribution to society. It has also helped me to keep motivated. Being part of the support group, I have been able to talk more freely about the difficulties of being a young person with HIV.

It is also why I am studying political science. I want to make the world a better place. Politicians are not concentrating on the real problems. I want to get into the system and try to make a change. My goal is to have politicians show more interest in fighting diseases. Because it is very hard to be sick. I know how hard it is.

I have a lot of friends who also try to spread the word.

People see me as a normal person now that they know what HIV is.

It is also clear that I can’t infect anyone because of the medicine I take. Basically, if you take the medicine properly you can’t infect anyone in any way.

But I have had some problems with the medication – the side-effects have been very harsh on me. The new meds are better, but every time I used to take the old ones – sometimes up to eight or 10 tablets at at time – I always felt nauseous and as though I wanted to throw up. But It doesn’t affect everyone in the same way.

I am responsible and do not have sex without a condom. But once, two years ago, I made a mistake. It is something that is very hard for me to talk about. I was drunk and then I had a sex with a girl, I don’t know why but I was very drunk. And when I woke up I couldn’t find a condom. At the time, I hadn’t been very good with the medicine. So I started crying. My worst nightmare is to infect another person with HIV because I know its difficulties. It was very hard. I was thinking about killing myself because I didn’t know what to do.
But then I managed to take action. I called the girl and told her that I was HIV-positive and that I hadn’t been very good with my medicine at the time. We called some nurses to take control of the situation. She didn’t end up with HIV but still I can’t forget it. I can’t forgive myself.

While I am healthy now, I have been close to contracting Aids at least twice.

The first time was when I just came to Denmark. I was close to dying. The doctor didn’t think I would make it. I actually had Aids at that point but somehow I guess I kept fighting. I was at the hospital for eight months or something but I kept fighting. I am here today.

The second time was about two years ago when I got sick from the side-effects from the medication. I had been taking the medication for so many years, but I was never able to get used to the side-effects. I didn’t want to take the medicine any more and I stopped. You know, you take medicine to get better but you actually get sick of the medicine. I didn’t take it. And my viral load went up, it got very high and my immune system went very low – far below the danger zone – where you start developing Aids. That was kind of a wake-up call for me. I needed to start the treatment again. And now I take my pill every day.

My message to young people is simple: Take your pills every day and don’t be afraid. Just open up. Don’t be afraid of people knowing that you are HIV-positive because then you find out who you can trust and who you can’t. Then you can be with reliable people, not with the fake ones. Just be yourself. Don’t let the sickness control your thoughts. You have to listen to yourself, be driven by your heart and don’t let HIV control your life. You have to control HIV. The virus has changed. If you have access to medication you can lead a normal life. There is nothing to fear.

As told to Azad Essa in Durban, South Africa.