The reality of HIV/AIDS in South Africa By Daniela Cohen

The reality of HIV/AIDS in South Africa

By Daniela Cohen

Published on Sat, Jan 24 2009 by Daniela Cohen

After the meeting to discuss Amazwi’s future, I found myself outside the office with Lydia.
“What do you think, Lydia?” I asked.
She shook her head. “Eish, it sounds good, but I don’t think I’ll manage.”
“What do you mean?” I wondered.
“My health is not good,” she said.
I felt alarm rising up within me, but tried to speak calmly. “What’s wrong?” I asked.
“I will tell you. I will tell all of you,” she said, “When I’m ready.”

Later that afternoon, Lydia, Briget and I walked to the local hospital to find a doctor who had expressed interest in advertising in the Villager.
“I want to have a meeting with all of you tomorrow,” Lydia said suddenly, “I need to talk to you.” I felt my heart come to a standstill.
“What’s it about?” Briget asked, “Advertising?”
“No,” Lydia replied, “It’s about me.”
Briget looked at me with confusion. I avoided her gaze. I didn’t know what was wrong with Lydia, but I knew it was serious.

Moment of truth

The next morning, I went to work with dread. I wondered if Lydia would follow through with talking to us or not. Sure enough, as we sat in our customary circle, she spoke up.
“There is something I need to tell you guys,” she said, looking grave. The tears had already begun to slip silently down my cheeks.
“What’s wrong?” Linky asked, looking curiously at us. I couldn’t speak; I just shook my head.
Lydia continued, softly but determinedly, “It’s taken me a long time to do this. I wanted to tell you so many times, but I was afraid. But you are my family, I love you all. You don’t know me. I need you to know me. Who I am…I’m HIV-positive.”
I wanted to scream. No! Why her? It couldn’t be. Lydia was the first of the journalists I became close to. Her generosity of spirt, wisdom and gentleness have meant so much to me. I couldn’t bear to think of her suffering with HIV.

Suddenly the HIV/AIDS epidemic in the country became very real. This was not simply a saddening phenomenon on the news, but someone I cared about was here in front of me describing her experience of its devastating effects. Lydia talked about how hard it had been to keep this secret, how she’d wanted to tell us for months, how she’d hated lying to us, but had doubted us, had been scared. We listened in shocked silence. Finally, we all gathered around her, our touch showing our support. Bongi knelt, her head bowed, lips trembling, hand on Lydia’s. Lou stood behind her, his hands on her back, his eyes shining with tears. Thandi knelt beside Bongi.

A painful past

Lydia’s story gradually unfolded. Years before, she had been married, but left her husband, tired of his cheating and beating. She took their child, Matimba, four at the time, with her. After Lydia had met another man and given birth to another son, Izan, she started to lose weight. Her father called, saying he’d heard her ex-husband was very sick, that he’d been diagnosed with HIV. He urged her to get tested. Terrified of what she might find, Lydia took three years to go to the clinic, at which point her clothes were hanging off her.

When was she finally tested, her worst fears were confirmed: she was HIV-positive. Althoughshe has been on antiretrovirals (ARV’s) for over two years now, since she was thirty-three, and appears to be living a normal, active life, what Lydia carries most strongly is the burden of guilt. She feels extremely ashamed of bringing disgrace on her family, even though they are very supportive of her situation. Her shame shocked me, as in my eyes, this is clearly not in any way her fault. The situation is complicated by the fact that her longtime partner and father of her second-born son, though also supportive, refuses to get tested. Lydia is still trying to convince him otherwise. Her children don’t know her status, but they see her take medication every day, so she thinks they may suspect something. She doesn’t know whether to tell them or how.

The reality of HIV/AIDS in South Africa

The painful stigma attached to the disease results in many South Africans not getting tested. People would rather die quietly than run the risk of others discovering their status. Those who know their status keep it to themselves, often not revealing it even to their closest family. Although the adult HIV-prevlance rate in South Africa is 18.1%, far above the rate in sub-Saharan Africa (5.0%) and globally (0.8%), few locals actually know people who admit to having the disease. The fear of being shunned is stronger than the need to share the burden. I am honoured that Lydia trusted us enough to take such a risk. And indescribably relieved that she has the support of those she loves. What if she had been one of the many whose own families cannot accept their diagnosis, and want nothing more to do with them? I shudder at the thought. The unwillingness both to disclose as well as get tested in turn contributes to the increased spreading of the disease. In addition, the acceptance of multiple partners as a way of life means the virus has a much wider network amongst which to spread. Even once women are educated as to their rights, men commonly ignore their requests to use a condom. In this part of the world, especially in the rural areas, it is the men who possess the power. Not surprisingly, therefore, 59% of the HIV-positive population in South Africa are women.

A January 2008 survey by the International Organization for Migration (IOM) conducted on farms around Acornhoek found that 32.5% of local female farmworkers and 20.9% of male farmworkers were HIV-positive. On a recent visit to nearby loveLife, an organization dedicated to raising awareness of HIV/AIDS among South African youth, one of the facilitators talked to the Amazwi staff about his views on the issue. Extremely passionate about his work, one of his biggest frustrations is the fact that while the youth seem to understand what they are being taught in the loveLife workshops, once they leave the centre, they continue to do as they like, rarely using protection. Their knowledge does not translate into action.

As the country with the highest number of people living with HIV/AIDS in the world, so many South Africans’ lives have been affected to some degree by the disease. The phenomenon of the child who has become a caregiver, and in so doing, lost her own childhood, is all too common in South Africa. The actions taken by the South African government to address the pandemic have been disturbingly lacking. Former President, Thabo Mbeki, has reiterated that HIV doesn’t cause AIDS although the population of his country is slowly being wiped out. Beliefs like those of the former Minister of Health in the power of beetroot and garlic to cure HIV/AIDS meant a long delay in the accessibility of scientifically sound treatment like ARV’s, in spite of their ability to effectively prolong patients’ lives. And who can forget ANC President Jacob Zuma’s remark that he wasn’t worried about getting AIDS as he’d had a shower after sleeping with an HIV-positive woman?

Feet on the ground

When I ask Lydia how she feels physically, she complains that her feet hurt a lot and they also go numb frequently. This is made harder by the fact that her job as advertising salesperson involves a lot of walking, going to meet people who often don’t show up. I do the only thing I can think of: I show her the exercises my Yoga teacher in Vancouver gave me, humming various sounds into the toes while massaging them. Lydia has now shown her youngest son how to massage her toes while making these sounds, and believes it is helping. But she still wakes up in the early morning, unable to sleep because of the discomfort. Lydia’s situation reminds me of how fragile life is and how precious. I am grateful for her presence and struck every day by her courage, wisdom and humility. She may not be well, but I believe we can all learn much from her about being better human beings.

Photos in this blog:

1.Lydia in her role as advertising salesperson outside the Amazwi newsroom. Photo by Bongekile Mhlanga.
2.Lydia and her six-year-old son, Izan. Photo by Daniela Cohen.
3.Lydia with her family: mother, two brothers and sisters-in-law, niece, nephew and youngest son. Photo by Briget Ganske.
4.Lydia with her medication. Photo by Briget Ganske.
5.Close-up at home. Photo by Briget Ganske.


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