Seventeen-year old Richard is soft spoken, timid and hardly ever makes eye contact during the interview. He looks down and fidgets with his hands while carefully answering questions. He is HIV-positive and has been living with the virus since birth. His mother passed on when he was a year old.

‘€œIt hurt me when I found out because I would ask myself: ‘€˜With so many people in the world, why me’€™?’€ says Richard.

‘€œIt didn’€™t make me happy. But as time went by my family supported me and I accepted it. My aunt told me about my status. I used to ask many questions whenever I saw adverts on television. Even my uncle was sick from it and I would wonder why he was constantly sick’€, he continues.

Fortunately for Richard, he had his family to lean on for support, especially when he was very sickly, which affected his attendance and performance in class. He is now in Grade 9 and has changed schools four times. He attributes his instability at school to the treatment he received from some of the teachers and learners. He says he still bears memories of his bad experiences.

‘€œSchool was not easy for me because other teachers would stare at me whenever I’€™d walk past, while others would simply accept me because there was nothing else they could do. They would gossip about me and I always felt like an outcast – as if I was treated differently to other learners. But my worst experience was when I heard that a girl I knew at school told most of the learners about my HIV status and they made a joke of me, teasing and laughing at me. That hurt me a lot’€, he says.

Richard has been taking anti-retroviral drugs (ARVs) since the age of three. He says because he has accepted his HIV status and is well equipped with information on how to manage it, he lives a normal life like any other teenager.

Following the death of his mother, Richard became his grandmother’€™s responsibility. After the granny died, he and his two siblings moved in with their aunt and her two children. The Wits Institute for Sexual Reproductive Health HIV and Related Diseases says most adolescents who are HIV-infected are orphans as most of them were infected during birth. The Institute says adolescents are finding it difficult to cope with the burden of knowing their status and the reality that their primary caregiver has died.

Nataly Woolet who heads up the Prevention and Counselling Programme at the organisation, says society has normalised HIV and are not giving adolescents the support they need to cope.

‘€œBecause HIV has just wiped out communities for years we’€™ve almost normalised the kind of bereavement that goes with those losses. And many times these children are just not given the space to process some of that and to know that those losses go on for the rest of their lives.

If you were seven when your mom died, you will always remember her each year and each development stage in your life. That child will miss her incredibly and will be grieving at each point of those developmental milestones, and they are not well supported’€.

Woolet says another aspect that people do not consider is that these adolescents have had to grow up really fast after losing a primary caregiver. She says this also has an impact on the individual’€™s life and behaviour. Woolet says this contributes to the high number of child-headed homes and children living with their grandparents.

‘€œIn child-headed households you see that children have had to become grown-ups really fast. They need to know how to administer medication to themselves and siblings, which regimen it is that needs to be given.

They do that tirelessly every day, often living in incredible poverty or with very few adults in their lives who can support them by allowing them just to be kids who can play, be free or do whatever it is that they want to do. And I think most of the kids I’€™ve worked with have never had the chance to do that, and that’€™s very hard to see’€, she explains.

In addition, Woolet says it’€™s also harder for adolescents to disclose their HIV status to family or friends because they fear being rejected by their peers. She says this makes them to default on their medication because there is no monitoring.

‘€œFor instance, if they go to school in Soweto but during the holidays they go to relatives in Limpopo or Mpumalanga, nobody there knows of their status and they don’€™t want to speak openly about it. And teenagers go to parties… they won’€™t carry a bunch of pills with them. People can make connection because with ARVs, you take them at a certain time every day.

So, we get a lot of defaulting on medication when people don’€™t have a proper social support group or the social support group doesn’€™t know how to support around that issue’€, says Woolet.

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