In overcoming apartheid, South Africans showed themselves to be a nation of activists. Now this spirit of activism is being used to overcome HIV/Aids.
Nathan Geffen, spokesperson for the Treatment Action Campaign (TAC), says the struggle against apartheid has “influenced our tactics in our struggle”.
“For people with HIV there is now hope because there is the possibility of access to treatment,” he says.
There are approximately half-a-million people in South Africa who cannot access anti-retrovirals (ARVs), and about 300Â 000 of them will die this year, says Geffen. “Government needs to step up the speed of the ARV treatment roll-out.”
The TAC has a membership of more than 16Â 000 people. Although it is unable to determine how many of them are HIV-positive, Geffen says: “We’ve covered the cost of CD4 counts of over 2Â 000 of our members.”
The CD4 count measures the number of T-cells per cubic millimetre of blood and helps monitor HIV-positive patients’ immune system. Declining CD4 counts are considered to show the progression of HIV infection, and Aids is diagnosed when the count drops to below 200 cells or when other opportunistic infections occur.
The estimated number of Aids-related deaths in South Africa stood at 1Â 728Â 643 by March 15 — and a recent HIV/Aids risk-assessment study showed more South Africans were displaying high-risk sexual behaviour than before. It also said South Africans were still in denial with regard to HIV/Aids.
The study, conducted by market-research firm Markinor, also found that the stigma surrounding HIV/Aids was still rife. Almost nine in 10 (88%) respondents agreed in principle that people with HIV/Aids should be treated like anybody else, but 20% said people living with HIV/Aids should be separated from healthy people, isolated and given separate facilities so they could not infect other people. The same proportion (18%) would avoid a co-worker if they knew that she or he had HIV/Aids.
But what goes on in the mind of an HIV-positive person?
Professor Graham Lindegger, a clinical psychologist and lecturer at the University of KwaZulu-Natal, says the normal response of a person who has tested positive for HIV/Aids is that of “shock”.
“A common response is an extreme state of fear and anxiety. How people respond individually depends on the context in which they are. It’s very difficult for them if they can’t disclose it and they can’t share it with anyone,” he says.
However, he says the perceptions of people who are diagnosed with HIV/Aids today has “probably changed a little” because of ARVs. Many HIV-positive people now see HIV/Aids as a “chronic sickness” rather than a “death sentence”.
Lindegger adds that people sometimes “find themselves” when they discover they are HIV-positive. Many deny that they have HIV/Aids long after they have tested positive, but many don’t feel the need to “hide themselves as lepers” because of their status.
The Mail & Guardian Online spoke to three HIV-positive people about their experiences of testing positive and living with HIV/Aids. These are their stories.
‘I’ve been scared for eight years’
Nobuzwe Mpandle (28) has been HIV-positive since 1996 and recalls the day she was informed of her status with ease. “I didn’t accept it. I was in denial. I was telling myself, ‘No, not me.'”
For unknown reasons, Mpandle’s doctor gave the HIV test results to her mother, who then asked other family members and friends to be present.
“In front of everybody, in front of my family and my neighbours … She didn’t know how to tell me. I was disappointed in her. I thought she would’ve told me personally.
“It was like it was going to be a funeral. It was like death.
“She was the one that was so shocked. She made me more shocked because she thought that I was going to die. I was thinking about death. Death came into my mind because at that time, we didn’t know much about HIV/Aids.
“My big brother was so ashamed of me. He said I brought this thing in the family. He said I’m a shame in the family. I was like a curse,” says Mpandle. “I ran. I just left them and I ran.
“I wasn’t wearing any shoes on my feet … My brother looked for me and I saw him holding me, but my mind wasn’t there. I cried a lot.”
Mpandle said she contracted the virus after she was raped in 1995 and began experiencing opportunistic infections — such as thrush — shortly before she decided to have an HIV/Aids test.
She says being HIV-positive has changed many things in her life. Even though she gave birth to two healthy children after she was diagnosed HIV-positive, she says she is lonely and needs someone in her life.
“[HIV] changed a lot of things. I didn’t have any serious relationships. I didn’t like myself. I blamed myself.”
Some men “just keep quiet” when she discloses her status to them. “They do as if it’s fine. But then they don’t call again. It breaks my heart … but what must I do?
“[HIV/Aids] shattered my dreams. It shattered my every thing. I’m sad now. Even with my studies … I can’t concentrate any more. I forget very easily [but] I can remember certain things about HIV/Aids because it’s about my life.
“I thought I was going to die a long time ago. It’s when I learnt about it and how it enters your body [that] I didn’t have fear any more. It’s two years [since I started learning about HIV/Aids]. I’ve been scared for eight years,” she says.
Mpandle says her family used to coax her to drink mixtures that they thought would help cure her.
“[My family] would recommend [alleged cures] for me. I would take it, but I wouldn’t drink it. They would think that I drank it. I didn’t want them to feel that I was being stubborn,” she says. I was so thin. Now I’ve gained weight. I used to wear size 32. Now I’m a size 38.”
Mpandle works as a HIV/Aids treatment literacy practitioner at the Hillbrow clinic and at the Johannesburg General hospital. She says she plans on helping her older brother open an orphanage for children living with HIV/Aids in the future.
“I will help him open an orphanage. He decided many people in the community are having this disease. Many other people [and] relatives have died of it,” she adds.
Mpandle’s younger brother also tested HIV-positive, and although she was in denial about her status for many years, she says: “I’m accepting myself now.”
‘Yes, I’m positive, mum’
Godfrey Tsosoana (22), a gay HIV/Aids activist who works for the TAC in Gauteng, says he was diagnosed with the virus in February last year.
“I was so sad when I was given my results. I became so shocked at that moment. I just thought about the people that died and the opportunistic infections — all those terrible things came to mind.
“I was so scared. I was very, very scared. I was shaking and I had back pains that I couldn’t understand. I didn’t want to even come home,” he said.
He says his decision to get tested was because he wanted to know his status early in life and because he was involved in a sexual relationship at the time.
Tsosoana says he joined the TAC to learn more about the virus after he was diagnosed, and has become more comfortable with himself. “I just told myself that I’m HIV-positive now. I think it’s the beginning of living a new life.”
However, he admits to still being in the dark about how he contracted the virus because he insists he had used condoms in his previous relationships.
Tsosoana was hesitant to disclose his status to his family and friends immediately and waited nearly a month before he told his mother that he was HIV-positive. He feared her reaction.
He first questioned his mother about her feelings towards HIV-positive people and what she would feel if one of her children contracted HIV/Aids, before he told her: “Mum, I’m HIV-positive. Here are my results.”
She said: “Wow, you’re HIV-positive. Are you serious?”
“Yes, I’m positive, mum,” he replied.
Tsosoana says he doesn’t feel any different to any another person because of his status. “I just feel like a human being.”
The freedom of sex
Phindile Madonsela (34), a TAC Aids activist and mother of three, says that when she told her partner she had tested HIV-positive in 1997, he said: “They made a mistake.”
“Then I asked him to go for a test and he refused. I told him that from now on, we need to use a condom and he said, ‘No, we can’t do that!’,” she says. “He’s still alive [and] still denying that he’s HIV-positive. We had to break up. He refused to use a condom and he refuses to go for an HIV test.”
Madonsela says she gave birth to her youngest daughter, Owami, in 2004. At six days old, Owami tested negative. This is because Madonsela enrolled in the nevirapine programme that prevents transmission of the virus from a mother to her child. Her two elder children are also negative.
“I didn’t think that I was positive. I was positive in my mind that I was negative. When I got my results, I was so angry, tired and just emotionally sick. I didn’t understand myself,” she says about the day she tested positive. “[But] here I am nine years down the line and I’m still living.”
Madonsela says her positive status is a “blessing in disguise” and she is not afraid to disclose her status to anyone because she believes she can help others by educating them about the pandemic.
However, she says she has lost “some things” in life and “no longer has the freedom of sex”.
“When you think of making babies, you need to think twice. You must think of not infecting other people. And if a man approaches me, I tell him that I’m HIV-positive. But then they just run away,” she adds.
Madonsela says her next big challenge is to climb Mount Kilimanjaro. She wants to be the first HIV-positive female to climb the mountain. “There is something pushing me to do that.”
She adds: “I’ve been raped and I didn’t tell anyone about my rape until this year. It was somebody I knew. The reason I want to climb that mountain is because I’ve been through bad things. By climbing that mountain, it will be a healing process.
“I’m going to leave everything up there and come back and I will be clean. I just want to prove to people, if you are HIV-positive, nothing can stop you.”
Test results
Nobuntu Habe, from the New Start HIV/Aids testing clinic in Johannesburg, told the M&G Online she thinks the reaction of patients when they are first informed of their test results depends on their personality.
“[Some] cry. Others go quiet. If the person cries, you give that person a moment to cry. You sit with that person and you give them that time. Body language is very important in counselling. [When you see] the person is wiping their face, you ask the person how they feel,” she says.
Every patient who has an HIV/Aids test undergoes a pre-counselling session, says Habe, which includes a brief education on the epidemic, how it’s transmitted, the effects of living with HIV/Aids and how to manage it.
Patients are also quizzed on why they want to undergo an HIV test and about their support system to see if the patients “can cope” if they test positive for HIV.
Habe says that when patients talk about trying to commit suicide, they usually do so because they are “experiencing pain”. Counsellors usually book such patients into a counselling session the next day. If the patients are committed to returning for counselling, then they are not likely to commit suicide before then.
Nombulelo Mnisi, a counsellor at the Helen Joseph HIV/Aids clinic in Johannesburg, told the M&G Online that hundreds of patients visit the clinic every week to be tested for HIV/Aids.
The clinic also runs a wellness course for HIV-positive people, which provides them with an opportunity to learn more about the virus and how to live more positively with it. Mnisi says between 60 and 70 people attend the course, which is presented twice every week.
Many patients utter similar sentiments when they find out they are HIV-positive, she says.
“Some say, ‘I know my lifestyle and I was a person who was very cautious. I only slept with one person and how could something like this happen to me?’
“Some get depressed almost immediately. It’s very painful because you can see the emotional response. They become so shocked and they cry, and they’ve got mixed feelings. They get so scared and they instinctively think about their partners.”
Mnisi says the counsellors try “by all means” not to let HIV-positive people think of HIV as a killer disease. “People know that there is treatment right now.”
Thanks to the efforts of such clinics and the TAC, as well as the achievements of HIV-positive people like Madonsela, who wants to climb Mount Kilimanjaro, fewer people living with HIV/Aids will feel the need to run from their families.