Call him Ungweru to conceal his identity because the young man has been living with HIV for the past 12 years.
The 21-year-old is a regular mental health patient at St John of God Hospitallers in Mzuzu. He was diagnosed with HIV aged nine, but he is grappling to figure out how he got the virus which causes Aids.
“No one is telling me the truth,” he says. “Even my parents are not open with me.”
This has left Ungweru guessing and he usually isolates himself from his peers for fear of stigma, belittling names and insults.
“I want time to reflect on my status. Possibly I got the virus from my parents. When I knew my status, I had never slept with anyone,” he explains.
Ungweru’s long search for answers has left him stressed and depressed.
He has been admitted to St John of God Mental Hospital several times.
Taking drugs for a health condition he does not understand could be contributing to his worsening mental illness, he says.
His peer, Chisomo Shaba, is also struggling with stress and trauma after realising at the age of 14 that she was born with the virus. Without any prior counselling, she discovered on her own that the drugs her parents told her were treatment for asthma were actually antiretroviral drugs (ARVs).
“Since then, my life has never been the same. Some of my relatives do not want to share utensils with me. I now hate myself. Sometimes I find it difficult to interact with people,” she says.
Shaba’s predicament, she says, could have been avoided had her parents given her pep talk about her HIV diagnosis early in her life.
“It’s better to tell children living with HIV earlier than keeping mum until they discover on their own. Others may kill themselves or hate their parents if they don’t take the news positively,” she says.
Shaba says knowing one’s status liberates them and helps them open up about their situation and relate freely with others.
Most importantly, it helps them handle themselves positively to avoid transmitting the virus or getting re-infected.
“At my teen club, we discuss how to handle and protect ourselves. Late disclosure would deny adolescence of this vital information,” she says.
According to SOS Children’s Villages youth development coordinator Friday Chiwaya, the consequences of leaving children to discover their HIV status on their own as was the case with Shaba and Ungweru can be devastating.
He says: “Our society is awash with stories of young people committing suicide or suffering severe trauma upon discovering their status on their own. Some seclude themselves from their peers and parents because they feel betrayed, unwanted and abandoned.
“At worst, some live in denial. The bad feelings can be averted if children born with the virus undergo specialised counselling early in life.”
Chiwaya warns against stigma and discrimination which forces some parents and guardians to delay disclosure until the HIV-positive children reach an age where they can keep their status private and confidential.
He adds: “Breaking such news is not easy even to adults. It is a make-or-break moment for the child. Therefore, exercise caution and bear in mind the personal development of the child. It is safer to disclose the status of the child when he or she is able to receive and handle the news positively.”
Psychologist Ndumanene Silungwe says it is important for affected children to understand that they are not responsible in anyway and that they need not worry because medication is available.
The mental health expert from St John of God says parents require counselling forums to understand the importance of disclosure as well as what not to do when acquainting children with their HIV status.
“It is dangerous to hide information from the child who is HIV positive. This is likely to cause resistance and even poor compliance to treatment,” he says.
Silungwe says disclosure becomes more than necessary when a HIV-positive adolescents become sexually active and as they settle into a relationship.
“In practice, by six years of taking of treatment, partial disclosure would already have been done. There may be variations, however, between rural and urban based practices,” he says.
Tanaka Chirombo, board member for Global Network for Young People Living with HIV, says the youth may be denied life-changing lessons from peer clubs if they are not told about their status.
“Enrollment into teen clubs is on the basis of full disclosure, meaning those still unaware of their HIV status miss out this free health education,” he says.