To disclose or not
Three generations of women are brought together at the Paediatric High Care Unit in Edendale Hospital, Pietermaritzburg, KwaZulu-Natal. The youngest, Mandisa*, is only four months old and she lies in a white metal cot, her tiny hands bound so that she does not pull out the tubes that penetrate her body. An oxygen machine dangles behind her head. Mandisa is being treated for pneumonia, a common childhood complication resulting from HIV infection. Next to her, her 38-year-old granny, Julia, is looking out of the window, lost in thought. On her way to the hospital from school, is Lindiwe, Mandisa’s mother. She is 16 and was diagnosed with HIV infection at the hospital’s UNICEF and EGPAF-supported Family Clinic when she fell pregnant with Mandisa.
It is comforting to see the women rally around each other in such difficult moments. A positive HIV status does not always guarantee family support. Stories abound in South Africa of individuals who have been ostracised by their families and communities, even threatened with their life, when they disclosed their status or began showing signs of AIDS-related illness. Fear of stigma and discrimination often prevent people from testing and therefore getting life-saving medical treatment and counselling in time.
“The difficulty of disclosure to family is the biggest limiting step to getting on top of the problem of HIV in South Africa”, says paediatrician Dr Sanjay Patel, who is looking after Mandisa. “But we are putting pressure on mothers to disclose because in order to get antiretroviral treatment that will keep them alive, they need to have a ‘treatment buddy’ who will help them adhere to the medication.”
Disclosure can be a minefield. Who can you trust? Who exactly do you disclose to? Will they keep the information confidential? In Lindiwe’s family, the women have made a pact and kept their mouths sealed about Lindiwe’s and Mandisa’s status. The news has not been shared with other family members or neighbours. “If you tell people, maybe they will gossip. They interpret this virus as being for someone who is sleeping around,” says Julia, the effort of protecting her daughter from malicious neighbourhood talk evident in the frown lines that suddenly appear on her smooth forehead, she says, “I don’t like it because it upsets me and I feel like fighting.’
Little Mandisa is too young to understand the efforts that are being made to keep her from social alienation. She’s busy fighting her chest infection. What she will learn later is that the main reason she has a chance of staying alive is because her young mother had the courage to test herself and disclose to her female relatives that she was HIVpositive. This led to both mother and child being put on ARVs and receiving the kind of support at home needed to follow the treatment.
“I told my daughter, when we found out, that life must go on,” says Julia, “I’m taking care of the baby because I want to show my daughter that I care for her.” Julia politely signals the end of the interview by smiling and shifting her attention back to Mandisa, whose cries and small hands seem to be clamouring for food. She starts to gently spoon porridge into the baby’s open mouth. Granny and granddaughter become oblivious to outside distractions as they bond through their act of love. Indeed, life must go on.
*All names have been changed.