July 7, 2011
Josephine. (Photo: EGPAF)
My name is Josephine, I am 18 years old, and I live in Mukono District, Uganda. I was born with HIV, but I didn’t know my status until about five years ago. You see, I never met my mother; I was told that she died when I was very young. I spent my early childhood living with my father, stepmother, three stepsisters, and a stepbrother.
When I was four years old, my grandmother (who I called Jjaja) took me to live with her, claiming that I was being mistreated by my stepmother. I was too young to understand anything. While living with Jjaja, I fell sick for long periods of time. Hospital treatments didn’t seem to work, and I missed a lot of nursery school.
I remember my dad would sometimes visit me. But when I turned eight years old, he died, leaving Jjaja as my sole caretaker. Shortly after his death, Jjaja died too. It was a very trying time for me, especially since I did not know many other relatives. I missed my stepsisters and stepbrother, but there was nothing I could do since I had no contact with them.
In 2006, one of my paternal aunts took me to live with her. Soon after moving in, I fell very ill. My aunt took me to a hospital where I received many tests.
I remember that day as if it were yesterday. A counselor from the hospital sat me down and asked me if I knew about HIV and the ways it is transmitted. She asked if I knew my HIV status, and she wanted to know if I had been with a man. We continued to chat, but I still didn’t know what was going on.
Finally, the counselor told me that I was HIV-positive.
It felt like the whole world came to a halt. I didn’t know what to do. How could this have happened? I was so afraid. After all I had already been through, all I could think was “Why me?”
The counselor went on to tell me about “positive living”, and how I would still be able to lead a long and healthy life as an HIV-positive woman. She advised me to come to the hospital regularly for medication and counseling.
When the hospital shared my HIV-positive status with my aunt, she was very supportive and caring at first. She told me to be strong and kept my status a secret for me. However, after a few months everything changed. Suddenly, everyone knew that I was living with HIV. My aunt separated my plate and cup from the rest of the family and I was not allowed to use the cutlery. I was forced to stay home to clean and cook. I wasn’t even allowed into my aunt’s bedroom anymore!
Following my first visit to the hospital, I received a visit from a counselor and doctor. They persuaded my aunt to let me join a nearby school where she didn’t have to pay school fees. They also invited me to join a club for children like me – children living with HIV. The group, which was managed by the Elizabeth Glaser Pediatric AIDS Foundation, was called the Ariel Club. The Ariel Club was created in honor of Ariel Glaser, Elizabeth Glaser’s daughter who died of AIDS-related illness as a child.
In April 2009, I attended my first Ariel Club meeting. I couldn’t believe it - the other children were just like me! Meeting other Ariel Club members made me feel so happy. I was encouraged to see that some of the children were even older than me. For the first time in a long while, I had hope that I could live with HIV.
In the Ariel Club we played games, wrote, sang, and read. We also received a transport allowance to pick up our medicine from the hospital. The Club was a safe haven for me. It was the only time I forgot about my condition.
My involvement helped me to learn to accept my status and to talk openly about living with HIV, especially outside the club. After a year with the club, I surprised myself on World AIDS Day and stood up to tell my personal story to hundreds of people. After my speech, I received thunderous applause and many people, including children who thanked me for giving them hope and encouragement. I was so proud of myself. That’s when I stopped being afraid of speaking out.
Thanks to the Ariel Club, I know I am somebody. My advice to children who are going through similar situations is to be strong. Don’t lose heart. Take your medicines on time and trust in God. And if possible, join an Ariel Club, or a support group like it – I know it will help you cope with whatever you may be experiencing.
The Elizabeth Glaser Pediatric AIDS Foundation no longer provides services in Mukono district. As of May 2010, the Foundation initiated a new project, Strengthening Tuberculosis and HIV/AIDS Response in the South Western Region of Uganda (STAR-SW). STAR-SW is a comprehensive, district-based HIV/AIDS and TB program. The project now supports services in 13 districts in southwestern Uganda.
Children from Mukono district, like Josephine, continue to receive services through the Uganda Ministry of Health.