I started getting sick in 2004. I was coughing. It was difficult for me to eat. After being diagnosed with pneumocystis pneumonia I decided to be tested, and I found out that I was HIV-positive. No one forced me to do the test, but because I already knew something about HIV and AIDS, I felt I had to.
My CD4 count was extremely low and I weighed 28 kg (62 pounds). The doctors said I had full-blown AIDS. After a few months on treatment, I experienced side effects like peripheral neuropathy and vomiting. It was difficult for me to eat because I had mouth sores and diarrhea. But fortunately I picked up weight, thanks to the care of my family.
At that time, I was struggling to accept my HIV status because people were talking about me behind my back and it was difficult. But one day I had a dream. I saw myself talking in front of many people in a stadium. When I woke up in the morning, I told my mom that I had dreamt this, and she said, “If you feel like you can do this we are going to support you as a family. Definitely you can do it.”
I looked in the mirror—I still remember because my head looked so big. I was thin, I had no breasts, and I was sick. I asked myself, “Nontyatyambo, do you want to die or do you want to live?” Something told me, “I want to live, but for myself, not for other people. Let me forget what my friends are saying. There is life after HIV. Nontyatyambo, just go out there and show them you can do this.”
That’s the day I started to accept my status, which was the first healing for me. You can take medication but if you don’t accept your HIV status, you are not going anywhere. I joined a support group, where I met people and was introduced to Treatment Action Campaign. I’ve worked at TAC from 2005 up until now. I started educating people, telling them about my story, that I am HIV-positive, and that I’m not going to die.
When someone approaches me and wants to have a relationship, the first thing I do is explain that I am living with HIV: “I’ve got this little friend in my blood.” I’m in a relationship now and my partner is HIV-negative. Fortunately, she is very supportive and we are so happy. We have preventative tools that protect us from being infected, because for me it’s not only about protecting my partner, it’s also about protecting myself from new strains of HIV.
As an HIV-positive woman, it’s true that I face some challenges. I’m living with human papillomavirus, which can cause cervical cancer. I fear that one day my gynecologist will tell me, “Nontyatyambo, you’ll have to take your womb out.” But fortunately, my partner already has kids, and I believe that they are also my kids.
My step kids and I have a good relationship. There are three boys. The two older ones know about my HIV status. They are supportive and they love me so much. They are comfortable telling me anything, even things they don’t tell their biological mom. I want to see them grow. I want to see them experiencing life—without being infected. I hope that when they start engaging in sexual intercourse, they will have preventative tools better than condoms, so that they won’t be infected. I’m already talking with the two older ones about sex and sexual intercourse. They must start taking care of themselves now … yeah.