“I discovered I was HIV+ in 1998, after my 9 month old son was diagnosed positive. He had been suffering from chest problems and they told me he would not reach the age of 2. (He is now six.) I was very shocked as I had always been faithful to my husband. He was also tested and found to be HIV+. My child became sick and my husband left. He found it difficult to accept our HIV status and live with such a sick child.

“I heard of Wola Nani at the Red Cross Children’s Hospital from Daisy, a lay counsellor at Wola Nani. Initially, I was scared of going to the support group – I was worried I might meet people that knew me. But I was incredibly relieved and gained confidence. I found out I am not the only person who is HIV positive. There are many people who have the virus, and for a long time. Some had been diagnosed in 1991 and are still fit and well. If they can be well for so long, so can I.

“I was trained in home care and counselling and now work in the information centre at the Red Cross Children’s Hospital. I can provide information on basic hygiene and how to treat certain illnesses. So I can get some income to support my family. If someone comes in sick they are referred to me for pre and post counselling – even post if the diagnosis is negative. We also advise people where they can attend support groups like Wola Nani or MSF. The clients are asked if they’re interested in attending a group, there is no pressure.

“I have disclosed to my close family and friends. They are supportive and my mother was relieved to hear the news from me and not through gossip. But some of my family do not believe me, they say “if you had HIV, you would not tell us”.

“Some neighbours in the community come to me for help and advice, which I am happy to give. I get fed up with people being sick and staying at home. I encourage them to be tested, to take control.

“My husband refuses to join a support group. Since he started MSF treatment, he has been more accepting of his status as he has a better understanding of the virus, but he does not attend a group. However, he benefits from my experiences. I come home and tell him about the group’s discussions. Education plays a very important role in HIV.

“I enjoy my home care work. I like helping people, especially those who are sick, but also to help those who share the same problem. Sometimes a small piece of advice like how to treat diarrhoea – with flour and water, can have a significant beneficial impact.

“In Khayelitsha, once people’s CD4 count is below 200 or they are in stage 3 / 4, they can access treatment from MSF (if they attend a clinic regularly.) Knowing there are clinics that provide treatment encourages disclosure, open talk. In Khayelitsha there’s lots of disclosure. (MSF PMTCT transmission programmes).

“It is hard though, sometimes the home carers are turned away. We are not recognised on an initial visit, and may be turned away, the client may be hidden by their relatives, “no they are not here”. The clients may be reluctant to invite in a stranger believing the carer is simply checking up on them, on how the virus is doing. However, over time the relationship between carer and client develops. I can provide reassurance. Sometimes they think negatively. Are worried they are going to die. I can change their attitudes – tell them to take their medication, give them reassurance they will be alright.

“A problem for the hospital is that many people suffering with HIV may be in denial. They do not go to the clinic regularly or allow their case to be followed up. They may go to a private doctor to treat an immediate problem. He will not know their history or perhaps even their status.

“A neighbour who was very, very ill. She was in and out of hospitals, at stage 4, diabetic. She had not disclosed for years because she wanted to have a baby. She was very sick. Could not do anything. I thought she was going to die. And then I saw her. She had a miraculous recovery… and she is not on treatment. She can make her bed, go to the toilet, walk around without a stick. I think maybe God has a way of deciding when is the time.

“For the future, I worry about my 2 boys who are 6 and 12 years old. She thought my brother could look after the children after I’ve gone, but he died of TB in 2000. My sister is a drunkard and has 2 children who I already provide for. My mother has a pension, but R700 is not enough to support them all.

“I wish when I die, there is a proper place where they will be cared for. I would like to leave them staying nicely.”