Out of darkness and into light: My story
The doctors told my mother that I probably wasn’t going to survive, so she left me in the hospital
I was born prematurely at seven months. The doctors told my mother that I probably wasn’t going to survive, so she left me in the hospital. At some point during my stay in the hospital I was given a blood transfusion. That was how I got HIV.
"When I was 14 days old my grandmother discovered I’d been born and came to get me. She has brought me up ever since."
As a child, I was always sick. I was very short and thin, my teeth kept falling out. I was hospitalised many times but no one knew what was wrong with me. I was passed from hospital to hospital. I was sent to a hospital for disabled children. They thought I might have leukaemia so they sent me to a cancer hospital. There I was tested positive for HIV and was sent to the Tashkent Medical Institute.
My grandmother was so shocked and stressed by the diagnosis that she had a minor heart attack. As for me, I was only 6. I didn’t understand anything that was happening to me.
In hospital, I had several courses of treatment for other illnesses, but it wasn’t until I was 9 years old that I started anti-retroviral therapy (ART) for HIV. Initially I accepted it well, but then I stopped growing properly. A new drug was added which affected my ability to walk.
I was put on a ward with adult patients – they terrified me and my grandmother: “You won’t live long,” they told me, “You’ll die. And you wouldn’t have got this disease if you’d been a good girl!” The health workers tried to explain things to my grandmother but they never talked about things with me.
After talking to those patients, I got really depressed. When I got out of hospital, I started to isolate myself from my friends. I didn’t want to talk to anyone. I stopped going to school. I didn’t know anyone else of my age who had HIV so I truly believed it was only me, and those adult patients who’d told me were right that I was going to die.
At this point, my grandmother was told about a centre for children with HIV, being supported by UNICEF. “There’s a group there that will support her,” she was told. I’d started asking my grandmother lots of questions, “Is it true? Am I really going to die? Why did I get this?” She visited the centre and when she came back she told me that all my questions would be answered there.
I remember it was close to New Year. When I arrived at the centre, there was a group of girls making decorations. I got chatting with them, but I had no idea they were HIV positive like me. As I said, I thought I was the only one! I don’t remember what questions I asked the health workers specifically, but I do remember being told that there was no need to be scared any more. I was so relieved.
Initially, I came to the centre every three months. I would have liked to come more but we lived 100 kilometres from the city centre, and my grandmother wasn’t wealthy. When I did come though, I’d share my life and my stories with the other girls. “Where are you from? How is your treatment going? How did you get infected?” It was the only place I could talk freely about being HIV positive. Seeing how friendly they all were, how they met the world with a smile, made me want to go to the centre more often. I started to engage with life again. I felt, at last, that I had escaped from the darkness into the light. My grandmother and I were no longer alone in dealing with HIV. We were surrounded by supportive people.
Видя насколько они были дружелюбны, как они встречали мир с улыбкой, мне хотелось чаще ходить в центр. Я снова начала интересоваться жизнью. Наконец, я почувствовала, что убежала от тьмы к свету. Моя бабушка и я больше не были одиноки в борьбе с ВИЧ. Мы были окружены поддерживающими нас людьми.
I dream about a day when people in my country will stop seeing us, people living with HIV, as threat to society.
Azima, who lives with HIV in Uzbekistan, has been taking antiretroviral therapy for seven years now. In the HIV Day Care Centre in Tashkent she helps her peers to adhere to the therapy through her own inspiring example.
I trained as a peer supporter. It’s given me a lot of confidence. Health workers can give information about why you must take your drugs, but someone who has experienced HIV can really explain how to overcome the challenges. The biggest one is dealing with the stigma of the disease, not just other people’s views, but all the questions; “Why did this happen to me? What did I do to deserve this?”
Anywhere I go, I want to change the way people look at us – children living with HIV. I want to remove the stigma they have in their minds. With UNICEF’s support, in one of the charity fairs, I stood next to a board which read – ‘I am HIV positive. Hug me!’ I was so happy when hundreds of people stopped, read the board, looked at me and gave me a warm hug. I also saw some people who looked at me with a strange expression and walked on. They didn’t know what to do. I felt sad for them. The fear they hold in their minds is born out of the darkness of ignorance.
"When you walk through the door of the HIV Day Care Centre, the first thing that strikes you is that it is bright and full of toys. I specialise in making crafts here. I want to be a craftswoman when I’m older."
Last year I also made a short broadcast on TV and radio with UNICEF’s help about living with HIV. I wanted to be open about it and my grandmother gave me the strength to do it because I knew that she trusted me. After the video was broadcast, I got so many messages of support! I didn’t expect that. Some other children from the centre also participated in these shows.
When you walk through the door of the centre, the first thing that strikes you is that it is bright and full of toys. There are children of all ages. I specialise in making crafts here. I’ve even started selling some of my bracelets. I want to be a craftswoman when I’m older.
Azima loves making crafts in the HIV Day Care Centre in Tashkent. She plans to become a craftswoman when she is older.
I’ve been coming to the centre for seven years now. In that time, they have been training adolescents like me to train others to support children with HIV. This year two teenagers from the centre are even going to Amsterdam to take part in a big AIDS conference. Ours was the only project in Central Asia to be selected to participate. Thanks to the centre, I feel more energetic. Now, I accept HIV and ART as part of my life and I wouldn’t have it any other way. If more people could see what goes on at the HIV day care centre, perhaps they too wouldn’t see HIV as so much of a problem.
This is the story of Azima, a 16-year old girl living with HIV in Uzbekistan. As narrated to Alice Allan.