"My HIV-status is not my weakness, it is my strength"

Fatima's story of living with HIV and beating Covid-19

UNICEF Uzbekistan
A girl holding a pin with red ribbon.
UNICEF Uzbekistan/2019
30 November 2020

Fatima, who is now 18 years, has been living with HIV since she was four. She also has tuberculosis, a common HIV opportunistic infection. This left her with a compromised immune system as well as weak lungs. So when Fatima found out that she had Covid-19 this summer, at the peak of the coronavirus outbreak in her native city Tashkent, she and her entire family became extremely anxious.

“I had no idea what to expect, there was a lot of conflicting information about this new virus. People were saying that only those with strong immunity could recover from it. I saw healthy people fall seriously ill after getting infected. This all was quite disheartening,” she says.

Fatima is not in the age group that is at risk of having severe Covid-19. But, unfortunately, she did become very sick and eventually needed hospital treatment. Lying in bed in an intensive care ward, she even remembers asking herself “Am I going to die?”. 

This anxiety and uncertainty took her to the first time, her parents disclosed her HIV status to her. She recalls this is exactly the same question Fatima asked two years ago when her parents told her for the first time that she was HIV-positive.

Coming to terms with HIV

Her parents chose not to disclose Fatima's HIV-status to her until she turned sixteen as they did not know how well she would be able to cope with the diagnosis as a young child. When they finally decided to have a conversation about it, she was already going through a spell of depression, having learnt about her condition at a clinic where she had been treated several months before that. “I knew nothing about HIV back then. At the clinic, I heard people say that it was a fatal disease. I was very depressed but told no one about it. I waited for my mom and dad to explain it to me. … I was angry with my parents for not telling me about my illness and stopped taking my pills,” she says.  

It took a while for her to bounce back. One of the first steps towards recovery was her visit to the Daycare centre for children and families affected by HIV in Tashkent. There Fatima learned what HIV really was and met other HIV-positive teenagers. She started going to the centre regularly, attended training courses and made a lot of new friends. “At the centre I met with psychologist, who helped me a lot to understand my condition. She was the one who convinced me that it was not the end,” Fatima recalls.

Starting with her classmates Fatima’s shared her new knowledge, skills and disclosed, much to the pride of her peers “I really wanted everyone to know the truth about this disease and to understand that people with HIV are just like them, not some bad people and that they should not be stigmatised.

With time, Fatima grew passionate about raising awareness about HIV and helping others suffering from it. She completed three training courses supported by UNICEF and Republican AIDS Centre to become a trainer herself. Now she works alongside other volunteers to help HIV-positive adolescents and their parents to understand the virus better and learn how to live with it. Her passion and work have resulted in recognition, as she was elected a member of the UN Youth Advisory Board in Uzbekistan.

Staying together to beat Covid-19

But her plans have been disrupted by the coronavirus pandemic, which also caused her and her parents to become seriously ill.

Fatima says that the hardest part of her experience with Covid-19 had to do with psychological reaction. “When you fall ill with Covid-19, I think the main challenge is panic and fear. I was afraid very much because so many people were dying around me. The fact that I have weak immunity only added to the stress. I could not help thinking ‘Haven't I had enough pain already, why do I have to battle yet another illness?”

Though Fatima’s mom and dad were fighting their own battles against Covid-19, they kept in contact with her over the phone. “We all supported each other throughout this period. My parents were my main motivators. My friends from the Daycare centre for children and families, affected by HIV also kept texting me every day, saying they needed me there.”

Fatima believes that it was this feeling of togetherness and support from the family and friends that eventually helped her to beat the disease. After twenty days in hospital, she finally tested negative for the coronavirus and was sent home. She has since fully recovered. So did her parents.

Staying positive

As someone who has experienced COVID 19 firsthand, Fatima understands well how it feels to be infected with the coronavirus when you already have HIV. That is why she advises her peers to follow personal hygiene and observe social distancing to stay away from danger. But even if they do get infected with it, it does not necessarily mean that they will get severely ill. Fatima says: "If you are living with HIV you probably have enough willpower to cope with the feeling of anxiety that may come with Covid-19. Stay positive and hold on to any thought that can motivate you. A lot of people, including HIV sufferers, are getting this virus and doing OK. Keep taking your antiretroviral therapy pills, drink a lot of liquid and eat well."