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Battling the fear of stigma

“My life with HIV has been long.” Sarah is a beautiful woman in her twenties, and she seems to be managing her life just fine. A university graduate, she works for an AIDS association in Nairobi, a job she juggles with the demands of motherhood. She has her own place in Kibera, a sprawling poor neighbourhood on the city outskirts.

But a conversation with Sarah reveals that living with HIV presents at least two pressing problems for her. One is the difficulties involved in going to the health centre that gives her treatment. The other is an oppressive fear of stigma.

Sarah has come far since being diagnosed 12 years ago. “I was in denial for three years. I didn’t tell my family, I didn’t want to go to hospital, I only went to church and told myself I was healed. Then my CD4 crashed. I got pneumonia and TB, I was so thin, it was obvious. I looked like I was dying. I had to tell my parents.”

Sarah had to face her parents’ shock at learning her diagnosis. “I was their first-born, going to university. It was like their dreams were dying. They had to go for counselling. It was a bad time.”

Grief-stricken she might have been, but Sarah’s mother consistently took care of her extremely sick daughter, who was going in and out of hospital. Sarah started taking ARVs and TB treatment, and gradually began to get better, until she returned to university and graduated.

To this day, however, Sarah is so afraid that someone might find out she is HIV-positive that she’d rather skip her medication than risk anyone noticing what she is taking it for. “Have I ever not taken my medication? So many times! If there is a family gathering, or if I am out somewhere, in a club, or with friends. For today, I tell myself, for today, I will not take.”

Clearly Sarah feels “stigma is still out there although many efforts have been put into reducing it”. Her nightmare is that someone may find out and “start spreading stories in the whole neighbourhood, and when you walk along the road, people are looking at you. You don’t want that to happen and so you keep your status as secret as you can.”

Sarah’s fear of being “discovered” pervades her home too. “I try to hide my medication at home because I don’t want the house girl to see it. I lock it away but I could forget one day. I don’t want to leave medicine for my baby with the house girl when I am at work, because she may start asking questions. In the evening, when I return, I’m so tired that sometimes I forget to give my baby the medicine myself. It’s because of stigma: if I didn’t feel stigmatised, I would just leave instructions and go.”

Going to the clinic is another trial for Sarah. “It is an outpatient clinic, and I’m afraid someone will see I am HIV-positive, because my treatment card is a different colour. So when I go, I have to hide my card. Also, people know what HIV medicine looks like now, and I don’t want them to see me taking it.”

If going to an outpatient clinic is bad for Sarah, going to an HIV clinic – as the clinic was before – felt even worse. “If you come from another neighbourhood, it is not so bad, because you are leaving. But if it’s in your neighbourhood, your mother, your cousin, can see you.”

Recently the clinic where Sarah goes was taken over by the government, merged with other centres, and relocated. Reaching the place is a major headache for Sarah now.

“It’s about an hour from my home. I have to go deep into the slums, where there is mud and garbage, and cross a stream to the other side. There is a bridge but that’s even further away. When there is flooding, you can imagine how hard it is. I go monthly and it’s hectic to go all the way. When I am feeling unwell, I pay people to help me cross the stream. I cannot take a risk and slide in the muddy water with my baby.”

It’s hardly surprising that Sarah sometimes feels “the pressure is too much”. But she is a strong woman, stronger than perhaps she gives herself credit for. She gets on with her life despite the physical and mental challenges she faces. 

Something that helps Sarah is that she draws on truths learned over the years, especially in a support group that she used to form part of: “In the group, I realised I was not the only one. You see your neighbour, your friend, so you get courage. Being in this group helped me to overcome stigma.”

So even if the demon of stigma, or rather the fear of stigma, nags her persistently, at least Sarah knows there is another, truer narrative that she tries to hold onto: “At least I know I am stronger now, I have been empowered, so I can try to say: Let them think what they want, after all I know who I am.” 

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