Rwanda: My Story of Living With HIV for More Than 30 Years

Claire Gasamagera

KC Team

I was born with HIV and more than 30 years later I am still alive! I am sharing my story to comfort people newly infected with HIV as well as long-term survivors. Many people write about HIV but we rarely hear from people living with HIV themselves.

I was born on 8 June 1983 in Rwanda. I was a first born baby from a young couple. My parents were educated and were not poor – assumptions often made out of ignorance about people living with HIV.

A couple of days after I was born, something special happened: the first people to live with HIV held a conference called ‘Beyond Victimhood’ (9-12 June 1983) and out of this came their declaration called The Denver Principles.

But also around this time, as the public learned about HIV they got scared, and their fear and ignorance led them to hate and discriminate against people living with HIV. This was the beginning of the ‘Winter time of HIV’.

Growing up with HIV

At the age of five, my parents found out I was HIV positive. Some close relatives knew and they started counting the days I had to spend in this world.

The Winter of HIV was so cold, and lasted so long. I remember how my mum died, helpless, left alone, called all kinds of names and neglected by medical staff who considered that treating her was a waste of resources because having HIV was a death sentence.

My father loved me so much. He wished to give me the best last days of my life as he was convinced that I wouldn’t survive. However he kept hope, he fought for me, he took me to the hospital when I was sick and he taught me how to write our last name as he didn’t believe that I could go to school. I missed kindergarten and started elementary school when I was seven years old.

Developing AIDS

I was so thin, my body was covered by skin rashes and I was always coughing. By that time I had developed AIDS and other students used to make fun of how I looked. But God is good, he gifted me with a talent of intelligence.

I was HIV positive but other students needed me to coach them in sciences. Being brilliant in sciences helped me convince my classmates and friends that HIV was not defining me, that I have the internal resources they needed. During that long Winter time of HIV, beside living with HIV and being sickly I became one of the best students in the country and I was admitted to one of the top high schools.

HIV was considered by some a result of “questionable behavior”, and as a young lady growing up I was considered dirt, a child coming from sinners enduring the curse brought by my parents. It was so painful!

People infected with HIV were dying like flies. I remember seeing my father, my hero the most handsome guy, my first love, dying from AIDS related illness. You can imagine my fear thinking I will be next. I remember my prayers of that time, I was begging God to let me live.

I didn’t want to die so young. But people around me were affirming that I was dying and I didn’t need to worry about my studies as I wasn’t expected to live long enough to finish high school. There were times I wanted to give up but I kept going. There was a small light of hope telling me that I will survive.

The end of winter

Thankfully the ‘winter’ began to thaw with the rise of people living with HIV speaking up more and more.

I salute the courage of long-term HIV survivors who have spoken out in the times where we were still in the Winter of HIV. I salute Mary Fisher, Magic Jonson, Elizabeth Glaser, Jeanne Gapiya, Philly Lutaaya and many others who have spoken out to save the rest of us.

These people and many others have dealt with the hate, stigma and negative judgments associated with HIV from the first decades up to now and shown us how to live positive lives. They inspired me and made me believe that I can make it. Now, I hope to live well into my 80s.

We have built on the legacy of The Denver Principles – which first and foremost ensures those living with HIV are seen as people and not defined by the disease. But we still have a long way to go until we will see the end of AIDS and this will only be possible if people who live with the disease continue to speak out.