DRC: Three HIV patient stories

Elysee, 37, from Kinshasa

“I’ve been here at the Kabinda Centre for six days. When I arrived, my condition was much worse. I couldn’t sit up, I couldn’t stand. But now I’m better. I have a bit of pain, in my side mostly, but once those pains go away I’ll be able to go home. It’s a painful illness, a bit difficult… But what can you do! You can only live with it.

“I was born in Kinshasa, grew up in Kinshasa but I never knew about this place. In any case, HIV is not something people talk about.

“Five years ago, while I was working in a clothing boutique, I started to get thinner and thinner and people around me took notice. My sister brought me here, and that’s how I learned I was HIV positive. I was so confused… I thought, “I’ve never been a prostitute – how did I get HIV? I was married – how did I get HIV?” I continued to get thinner, and I went to another health centre. There I started taking medication but I was a bit negligent. If I had continued to take the medication, I would never have gotten into the state I am in now.

“There was a time when I totally lost hope. My family, my four brothers, they have all abandoned me. At one point, my husband took the children and sent them away to the village. It was my husband who gave me HIV.  He contracted the virus from a young woman in our neighborhood. When I started to lose weight, he threw me out and he married another woman. It was such a shock; I became depressed and that’s when all my misfortunes started. My husband has gained a lot of weight, wears all kinds of jewellery. When you see him you think, now that is a man! He has no problem! As for me, I call myself a ‘widow of love’.

“Most of the time, when families find out they have HIV, most of them abandon you. They’ll drop you and they leave, never to come back.

“While I was ill, people went to my house and took everything. They took whatever they could, believing that I was going to die. It was so traumatic that I had a relapse.  So when my health comes back, I’m going to put myself together well and no one will know that I’ve got HIV.

“I spent all my money in health centres and hospitals. When all the cash ran out the centre threw me out, saying 'Go home, you’re going to die'. A doctor said they couldn’t just let me die like that, so they brought me to MSF’s Kabinda hospital. If I hadn’t come, I would have died.

But here in this centre it’s different. When you arrive they change the sheets on the bed, they give you something to eat, even if you’ve wet the bed. You’re all right. They wash you, you’re clean. There’s a doctor who tells us about the medications we’re taking, and if you have a relapse, you come back. And if they see that you’re in bad shape, they keep you here and you stay. There is water, electricity all the time. There are some people who don’t want to leave because the conditions are better here.”

Text: Sandra Smiley

Elizabeth Mianda-Kapinda

‘I’ve been told that if you help people, you will have a long life.’

“I’m a widow – my husband died eight years ago and left me with seven children. Luckily, none of them are HIV positive. Four of them are still small and it’s hard; they require a lot of energy, which I don't have. It’s also hard for them to have an HIV-positive mother. One day when they were playing in the street, the other children said, ‘Go away, your mother has HIV, and your father died from AIDS.’ It was new for them; it affected them a lot. They cried. They are scared that their mother will get sick and leave them like their father did.

“To make a living, I had a small shop between Brazzaville and Kinshasa. At that time, I had to pay for my ARVs, I couldn’t find any for free, but I managed anyway because I had an income. Unfortunately, when the Congolese were pushed out of Brazzaville I had to stop the treatment because I didn’t have any money any more. So now, instead, I take other medicines that my friends sometimes give me, but they are not ARVs.

“Because I’m not getting treatment, I have become very sick. I have problems with my eyes, my skin, my head and my legs. My sadness is consuming me. When I look at my life, I feel depressed. There’s a heaviness in my heart. My heart aches.

“I have seen a number of people die because they didn’t have the money to buy their ARVs. It breaks my heart to see others suffer, getting sick and dying. I would like to have the government support us. I would like to have a place where we can get treatment.

“I would like to become a nurse so that I can care for others. I stopped my studies in the first year of lycée (high school); I would need two more years to finish them, but at the moment that’s not possible – always the problem of no money. But even though I’m not a nurse, I do my best to encourage others to hang in there and continue their treatment. I take care of other HIV-positive people and direct them towards support groups. I help with palliative care in my community and help abandoned patients. I find my strength and my courage in community support groups. I’ve been told that if you help people, you will have a long life.”

Text: Gail Womersley


Clémentine Tete

‘I rely on the generosity of others.’

“I am 45 years old and I am alone. I lost my parents when I was seventeen and I am now divorced because my husband left us, me and our five children.

“One day, seven years ago, I noticed that I had strange things on my legs. Later, I started to get a fever, so I went to a hospital in Kinshasa. Now I know that I have HIV and that these things on my legs are due to a cancer, Kaposi’s Sarcoma.

“But back then I didn’t know anything about it. I thought that it must be malaria or typhoid fever. When I asked the nurses what was wrong with me, they wouldn’t say anything. One of them said, ‘Go away. We know.’ Later, a nurse told my sister that I had a bug ... and that is how I found out I was HIV positive. I had no other choice but to pay for my medicines. I could for a while, but once my money ran out, they wouldn’t give me any more.

“When I left hospital I didn’t have any medicine or anyone to support me. Luckily I explained my situation to a friend who took me to the health centre. There, I was given medicines, but no explanation about what they were or why I had to take them. The medicines caused a lot of side-affects: my entire face swelled up, I couldn’t even open my mouth, or see because my eyes were too swollen. Perhaps it was an allergy, I don’t know.  

“So when I went back to the health centre six months later, I was in a bad way. Again, the medical staff stopped giving me the medicines – I’m not sure if it was because there weren’t any or because I was too sick. I wasn’t told anything. I was utterly desperate.

“Luckily I was able to meet other HIV-positive people who supported me. A lot of people helped me. Mama Clarisse from the RNOAC association sorted the situation out by talking to the health centre. She also sent me to the MSF’s Kabinda hospital. There, at the hospital, I was able to restart my treatment. They treated me until I felt better.”

Text: Gail Womersley