Delayed HIV-positive disclosure made me live a life of denial

What is the right age to disclose to a child about their HIV/Aids status? This is a major dilemma majority of parents with HIV-perinatal children have.

While some argue, the disclosure should wait, 23-year-old Sharon Maria thinks knowing the status early makes the children understand themselves and prepares them for the world. 

Maria recalls falling sick frequently as a child. By the time she was nine years old, no amount of medication would help cure her situation. “While the doctors were giving me more medication, my situation seemed to have been getting worse. The doctors then asked my parents to go for more tests,” she says.

And when the results were back, the doctors confirmed their worst fears; she was HIV positive. But this information was given to her parents who had to also undergo HIV testing. Maria’s father turned out to be negative while her mother’s results came back positive, meaning she had unknowingly transmitted the virus to Sharon.

Both mother and daughter were then placed on antiretrovirals (ARVs). But Sharon was never informed what the drugs were for and why it was important for her to take them. “At school, I could not understand why I had to take the drugs. I secretly resorted to stop taking the medication. Since my immune system was already weak, it did not take long before other diseases put me down,” she says.

Sharon was told of her HIV status when she was in Class Eight, and she became even more rebellious and didn’t accept the diagnosis. 

But despite her missing a chunk of the classes, because of falling sink often, she scored good marks during her Class Eight national exams, which landed her in a good girl’s boarding school. She had wanted to enjoy some freedom away from her parents.

 Stigma at schools

At school, she feared being discovered by her fellow students or teachers and therefore was inconsistent in taking ARVs. This made her a frequent visitor of the hospital. 

She was transferred to a day school where her  parents easily monitored her intake of the medication.

It did not take long before her new schoolmates also learnt of her “secret” but this time, she discovered that she was not the only one as she met other teenagers who were HIV positive and were not afraid of taking ARVs even at school. “Meeting my peers somehow made me accept myself. But still, my schoolmates and even teachers really made fun of me taking drugs and discriminated against me,” she says.

Sharon adds, “The teachers never allowed other students to touch my utensils claiming I could infect them. The stigma was too much and I was again transferred back to a boarding school where despite the challenges, I completed my secondary education and attained a mean grade of C.”

She was then sent to college in Nairobi where she threw all the cautions to the wind. She did everything to conceal her status and would do anything her typical peers would do. “We went to clubs, drunk and had random unprotected sex. I never cared that I might infect someone. One time some friends suggested we go for a HIV test and that is how they discovered my status. With rumours flying around, I had to run away from college and went home,” she notes. While at home, she discovered that she was pregnant and had to go and live with the man who was responsible for the pregnancy. Still, she never disclosed about her status.

Few months later she gave birth to a  baby girl with the help of a traditional birth assistants as she avoided the hospital.

But during the first ante-natal clinic, tests on the baby showed her daughter was positive. Further tests showed her husband was also HIV positive.

Sharon says these events were clear evidence of the denial she had been living in and decided to come out clean. 

“I do not want to blame it on my parents, but if they had told me of my status the moment they learnt about it, it would have helped me accept my status, understand the importance of taking medicine regularly and would have made it easy to disclose to my partner,” she says.

Learned from her own experience and mistakes, Sharon says she has ensured her first-born who is now eight years is aware of her status and the reason she is taking the ARVs. She says disclosure has helped her embrace her status, something parents with perinatal acquired HIV children should replicate.

Having the conversation

Robert Aseda, Head of Programmes, Network for Adolescent and Youth of Africa (Naya) says according to the World Health Organisation (WHO), the recommended age for disclosure is between 10-12 years. At this age, they are able to understand the status and can handle any information on HIV.

“Kenya has laws and policies on how children should be informed. This includes the Children’s Act, the HIV Act and the Kenya HIV Prevention and Treatment Guidelines, 2022. The underlying principle is always for the best interest of the child. It is important for children to know to enable them to take treatment, ensure adherence and also to enable them to make informed choices,” Aseda says.

Aseda says the HIV conversation should also move to schools as there is need to educate students and even teachers on the virus.

Out of 38.4 million currently living with HIV globally,1.7 million of them are children.

According to United Nations International Children’s Emergency Fund (Unicef), 111,500 children lived with HIV by 2020, the number having fell from 180,000 in 2010.

With these numbers, Aseda says HIV education will enable children to have correct information and enable them to avoid myths and misconceptions that perpetuate stigma.

He further says schools need to create safe spaces and communities of support for students living with HIV through clubs or support groups.

“Stigma is also fueled by lack of privacy and confidentiality and poor data security. It’s important that school management do not disclose information on health status to avoid stigma,” he notes.