“Don’t be afraid”
A positive message from young HIV peer educators in Kashkadarya
This year, World AIDS day calls for Shared Responsibility and Global Solidarity in the fight to reduce the inequalities faced by people living with HIV and AIDS. Jasmin and Akmal, two young HIV peer educators living in Kashkadarya region of Uzbekistan describe how their actions are making a difference to young people living with HIV in their locality.
When she was seven years old, Jasmin overheard a doctor giving her parents, and her, a diagnosis of HIV.
“I pretended I hadn’t heard anything. My parents didn’t say anything to me either. I think they thought I was too young to emotionally process my diagnosis and there is so much stigma about HIV in this country. Soon after, when we all started taking ART (antiretroviral therapy) they told me it was vitamins, but I knew.”
Her story is not rare, Akmal’s parents also kept his HIV diagnosis away from him.
“I was infected in 2008 after I had an operation. I was 12. When my parents learned about my diagnosis, they kept it from me for five years but when I was 17, I saw it on a piece of paper at the hospital and the doctor confirmed it.”
A few years later he was introduced by a doctor to a group for adolescents, living with HIV at a UNICEF supported Day-care centre for children and families affected by HIV in Tashkent.
“My life changed when I joined the group. Up until that moment, I thought that only older people had HIV. I thought I was the only young person to have it, but at the centre I met lots of like me. We were just the same. We got chatting, we went on trips.”
Jasmin could not agree more on the transformational impact of the peer support. “Now my disease is just ordinary to me. I take three pills a day— I go to the hospital every three months for a check-up, and every 6 months for some injections. That’s it. My mother says to me, ‘You can live just as long, even longer than other people if you just take your pills on time.’”
Both Akmal and Jasmin are giving back to the Day care centre that supported them by volunteering as peer educators and young HIV activists. At the centre, psychologists and social workers engage with children to help them develop questions about their condition, which they then answer. Children who are supported in this way experience less psychological stress about their diagnosis, and the long-term effects show that it gives them an increased ability to manage their health.
As peer supporters, Akmal and Jasmin join staff to talk to young people; they share their experiences and offer emotional and practical support. They also run training sessions on living positively with HIV.
“The thing that upsets children is seeing their parents’ responses,” says an insightful Akmal. “They are frightened by their parents’ fear. But when other young people talk to them, they are easy with it. They accept their diagnosis. The younger the child, the more easily they adapt.”
For Jasmin the perspective of younger generation helps: “Whenever I attend hospital appointments, I meet older people and they can be very pessimistic. But I don’t accept that way of thinking. I have my own mind, and I have a lot of knowledge about HIV, so why should I accept their pessimism?”
“To a newly diagnosed young person, I would say – life goes on. Don’t worry. You are just like other people. Just take care of yourself and love and accept yourself. Don’t compare yourself to other people. To those who have a family member or friend who is living with HIV, just remember, we’re not different. We’re just like you. When we take ART we can’t easily transmit our illness to anyone. You can still be a friend and give support. Don’t be pessimistic like the older generation. Don’t be afraid.”
She continues, “When I talk to children, I encourage them. I tell them, carry on with your life, learn languages, be children. I play with them, allow them to be just kids. I explain things to them in a child-like way.”
While because of COVID-19 lock down, the activities at the Centre were put on hold, and across the country, hundreds of young people and their parents have been cut off from psycho-social support, peer support and comradeship. Jasmin and Akmal are keen to get back to volunteering as soon as possible:
“We used to meet every week before COVID—we ran lots of trainings, conferences and events. We’re looking forward to inviting parents and children back to the centre, to participating in games and trips and concerts and sharing information with them.”