Living positively starts with accepting your status

Twenty-year-old Yvonne Ainembabazi is the miss Young Positives for Western Uganda for 2018/2019. The first year university student pursuing a Bachelors’ Degree in Social Work and Social Administration was born with HIV. Her mother passed on and she was left in the care of a maternal aunt even though her father is still alive.

Miss Young Positives is an initiative of Uganda Network of Young People Living with HIV, a community based, Non-Governmental Organisation, which brings together young people living with HIV in Uganda for action in scaling up prevention, care and support services.

Getting to know her status
“I have been taking ARVs for as long as I can remember but to be more precise,I started when I was four years-old. My aunt took very good care of me. She would remind me to take my medicine every day and I did it without resistance. With time, I became curious and started asking why I was taking the medicine,” Ainembabazi narrates. Her aunt would tell her that it was medicine for tuberculosis and other times that it was for typhoid.

There was a radio programme on HIV/Aids that used to air on a local radio station that Ainembabazi’s aunt would encourage her to listen to.

“At the end of the programme, she would ask me what I had learnt. Most times, the speakers would make it seem like whoever was HIV positive was going to die,” she recalls.

But her aunt would tell her that one can live with HIV and have a good life. When she turned nine, she refused to take her ARVs because she did not understand why she was taking them. Her immunity was compromised and she fell sick.

The revelation
“My aunt with the help of a counsellor told me that I was positive. I then got to understand why my aunt kept telling me to listen to the radio programme. They told me that I was going to be fine if I took my ARVs,” she says.

It was 2008, and she was in Primary Four and knew what her status was and the complications that would arise if she did not take her medicine. She took the ARVs religiously in the morning (7am) before she went to school, 7pm in the evening and 9pm before she went to sleep.

She says, “I think every parent or guardian that has a child with HIV should tell that child when they are still young so they can accept who they are rather than waiting to tell them when they are already adolescents. When told late, they are prone to living in denial.”

Didas Rutungye, a clinician at Kabale Regional Hospital says the age of disclosure is not yet ascertained but by 10 years, a child should be aware of his status. But of course this depends on their cognitive understanding. For a dull child disclosure can take longer.

Rutungye says when their status is disclosed, a child is able to know why they are taking the medicines.

“It helps with adherence. Because they now know the importance of the medication, they will take it, ” he says.

Supportive school system
Two years after knowing her status, her aunt took her to a boarding school and there she did not find as many challenges since the staff knew her status.

“My aunt told the head teacher that I was positive and that I would need more medication. Also that he either had to call her to send more ARVs or that I should be allowed to go and pick the medicine myself,” she says.

Ainembabazi adds that whenever she got a problem like difficulty in breathing and fainting which happened often, the teachers at her school would take her to hospital even before her aunt knew about it. She would be called after reaching hospital.

“I would play hide and seek with the pupils whenever it was time for me to take my medicine. I always hid in the sickbay from where I would swallow the medicine. The nurse was aware and was very supportive. Never at one time did the children suspect. They only asked why I was always hiding in the sickbay,” she recalls.

The role of family
When she was going to join secondary school, her father asked that he takes care of her and as a child, she was left with no choice except to go with him. She was brought to Kampala and started school but since the father was always away at work, she did not receive the same care and attention as she had had with her aunt in Rukungiri.

“There were times I would miss taking my ARVs for two weeks, even for a month because the person that had to bring them on the bus had forgotten. My father was more concerned about me going to school. My adherence became low and I fell sick.”

She remarks that family support is a very vital aspect in HIV care and treatment.

“We need a supporting family that we can cling on. It helps us even in the adherence to the ARVs since such a family always reminds us to take the medicine on time. We are affected by families that fight to take care of us yet sometimes they do not know how best to do it,” she says.

She was taken back to her aunt in Rukungiri and although her CD4 count had gone down, when she was given the ARVs, with the support from the aunt, she regained her immunity and strength. She was also able to complete Senior Six.

Living a life of influence
She became part of the Elizabeth Glaser Paediatric AIDS Foundation in 2011. She is an ambassador who encourages and empowers youth living with HIV.

In 2018 when she was in Senior Six, Uganda Network of Young People Living with HIV came with audition forms to her school looking out for a beauty queen that can also act as their ambassador.

“Friends and counsellors encouraged me to fill the forms. It was a bold step but I stood out to tell the people that I was HIV positive. There were other young positives that contested with me but I emerged the winner of the Miss Young Positives for Western Uganda for the year 2018/2019,” she says.

Advice
Ainembabazi believes that there are so many opportunities and that she will be able to accomplish and fulfill. She wants to use her experience to sensitise people about HIV, encourage young people with HIV to live responsibly and also families to take up their role in supporting people with HIV.

She says, “I want an HIV free generation. This is why I come out to tell people about my status. For all people that are HIV positive, living a better life starts with accepting your status, having ambitions in life and work hard to get to the target.

[email protected]