My story is an amazing story of growing with HIV. I hope that by telling it in a series of blog posts, I will encourage a generation of people born with HIV and their families to speak up, share their experiences and know that they are not alone.
I was born in 1983 in Rwanda in Africa and was the first child of an educated and loving young couple.
Dad used to tell me that as a baby I was always crying. My parents would get exhausted as they couldn’t find out why I was crying and my dad concluded that this was my way of chatting with them. They got used to it until, when I was 15 months old, I started speaking eloquently.
Though I had a very developed speech, I couldn’t walk. I looked malnourished and I was sickly all the time. Then my mother got seriously sick after giving birth to my young sister. She was hospitalised on and off and I didn’t see her much until she died of AIDS in 1988. She was very thin, pale and suffering. By the time she died I was seriously sick with pneumonia but friends and family were praying for my mother to survive. They were less concerned about me surviving – after all I was a child and they knew little about me.
Asking questions
After the death of my mother, my sister and I remained with my dad. He was a very loving, handsome guy. I adored him and he was my whole world. I continued being sickly and I couldn’t start school and when my sister started kindergarten, I was left home alone with the housemaids.
That’s when I learned that I had a serious illness. The housemaids made mean jokes and called me bad names. They didn’t want to change my sheets or clean my bedroom for fear of getting AIDS. I hated them and was miserable at home, waiting for my Dad to come back from work and report everything.
Most of the time, the housemaids were fired. But when a new one was hired, I didn’t trust them. It was a mess. I started asking questions about what it meant to have AIDS and why I was not going to school.
I used to ask my sister what she did at school and she would tell me: “At school we sing, we draw, play and eat.” It sounded fun and I wanted to go there too.
Dad would tell me that I couldn’t go to school because I was weak and I was not eating enough. I had wounds in my mouth and every time I tried to swallow something, it hurt. But because I wanted to go to school so badly, I started eating. I overheard my dad telling his friends that every time he was at work, he was worried that I may die alone in my bedroom. He kept telling them how he loved me and wanted to give me the best in my last days of life.
Bullying and stigma
I was choked because inside I felt very much alive, although I was going to the doctor’s office almost every week. Dad started home schooling me. I learned a lot from him, but I kept insisting I wanted to go to school. I finally went to school and because I was seven years old, they took me into the first grade.
The realities of school didn’t match my imagination or the stories my sister used to tell me. It was such a boring place! I had to ask permission to go to the restroom and there were so many rules. I was also very thin and sickly and the other students were not kind to me. They bullied me, calling me skeleton, AIDS, slim and other bad names. To escape the bullying, I decided to go to the class of my sister, who was still in kindergarten. She grew up to be a healthy big girl and I would sit next to her and feel safe. She learned how to fight because she wanted to protect me and we would come back home and report everything to Dad.
His answer may surprise you, as he would simply hug me, kiss me and tell me: “You can’t have AIDS, my dear, you are just a child. AIDS is for adult people.” I doubted him, as I had heard what others around me were saying. Dad started coming to school to talk to teachers but this didn’t solve the problem. But my sister became a big fighter; she was offended that the other students were treating me badly and they grew scared of being beaten by her.
Determined to live
Meanwhile, Dad was overwhelmed with doctors’ visits, staying up late watching me coughing and feverish, and dealing with my sister’s anger.
And although he was telling me lies about my disease, I now know he was doing his best to look after me and was just trying to protect me. At the time, I realised I was getting weaker and that’s when I started thinking about my future. I didn’t want to die. I started praying to God, telling him I wanted to grow up, become a big girl, grow my hair long, have big hips, use make up and be a lady.
God answered my prayers. I grew to be a big, beautiful girl, with long hair for an African woman and with big hips. I am here to share with you that I am still alive with HIV. I am hopeful and healthy. I am celebrating that I have achieved my simple childhood dreams but, as I look back, I light a big candle to all those children like me who didn’t make it.
I also know that the struggle is not finished when there are other young girls like me who are suffering from the same stigma and discrimination. They need to be encouraged by a big sister to believe that they will make it.
Read more stories from Claire Gasamagera
Find out why adolescent girls are the new face of HIV