Personal Perspective: Stigma in Zambia
In my country, we look at AIDS in a traditional way. We have unrealistic beliefs -- when you have HIV they think it may be the ghost.
But I was in a dilemma. I was sick on and off for a long time. My wife was pregnant and tested negative but I kept asking myself, "Why am I always getting sick?" When I went to the hospital they told me I had TB, but after being treated I wasn't getting much better. I was afraid to be tested for AIDS because I was told, "If you have HIV, you are going to die." Then I decided I was thinking too much about the illness and I wanted to know what was the problem.
As to the stigma, it was bad. The church did a very bad thing to me: after I told the church leaders about my situation, the preacher spoke from the pulpit saying, "Some of you were doing bad things and now you are sick." I felt stigmatized -- everyone was distant with me. When I was with them they didn't talk, but they talked to others about me. I would walk by and they were quiet but as soon as I passed they would start speaking quickly and in low voices. Only one of the elders was supportive.
Our Vice Bishop died. When I had confided in him, he told me I was lazy. Then he ended up in bed because of his illness and was stigmatized by the same pastor who spoke about me from the pulpit. He had trusted the Bishop, but now he was stigmatizing him. It is a cycle.
I think there is some justice because nine of the people who shamed me are now dead, and they died quickly. I have found that people who shame others tend to die quicker. You find out they are sick and then they are dead. But I am still alive.
Traditional healers have also brought a lot of calamity. When some people come for testing, they say they were told by the traditional healers, "I have the medicine and I can't get the HIV. I can help you, too." We must send the message that people shouldn't mix traditional medicine and HIV meds. We must start a project to educate the traditional healers and the people in the communities who listen to them.
Before there was fear, because there were no drugs. So when you went for testing and found out you were positive, you knew you were going to die. Now the idea that the drugs must be taken for life gives a lot of fear to people. That's why other people don't want to take it. They also see people who take it and then die. I had seen many people who were very sick who seemed like they were going to die, but then they took the drugs and they didn't die. So I thought if I took it, I wouldn't die. That was my focal point. I wanted to live. At first I had problems adjusting, but now I have a good appetite and everything is normal. Now I look good and feel great.
I am trying to get my own income-generating work because a lot of jobs expose you to things that aren't healthy if you have problems with your immune system. I could get sick if I did one of those jobs.
My wife is now positive. She kept on being tested and now she is positive. She and I usually chat between ourselves to keep our emotions safe. For us, having enough food is the most important thing to our HIV status. It helps us to stay healthy and it helps us to avoid opportunistic infections because we are stronger. My wife's CD4 count is still high so she is not taking meds. When I first tested positive my CD4 count was 120. After they put me on medication it went up to 350.
A lot of people have the problem that when they are feeling good, they stop taking the medicine. I won't do that. Food, medication, and income generation are the three most important things for me and for most positive people.
Support groups encourage people who aren't tested. To help more people get tested we can prevent stigma by going from door to door educating people. People must understand the problem. It is just an infection which can be treated with medication. Seeing positive people who have declared their status and are healthy and productive, will lessen stigma.
Noel Mukaka is a former bricklayer who resides in the Bauleni Compound of Lusaka, Zambia.
This article was provided by AIDS Community Research Initiative of America. It is a part of the publication ACRIA Update. Visit ACRIA's website to find out more about their activities, publications and services.