“Acceptance and stigma were big issues for me in accepting my status,” says Ngosa, a young man living with HIV in Chazanga, Zambia.
“I experienced family and community stigma. At first, I did not know I was living with HIV, but I was given pills by a health provider. When I had arguments with my brothers, they would say things like, ‘no wonder you need medication’. Eventually, I asked the nurse about the pills I was taking and she was the first person to tell me they were for HIV.”
This was Ngosa’s experience as a teen in 2011, where he was confused, scared, and afraid to question those in seniority.
“When I learned that I was living with HIV, I felt like I would die without achieving anything good in life.”
But then in 2016 things changed.
“They took me to the hospital and did the tests. They found out that my CT4 was low, and the viral load was high in my body. I was dying. I started taking the drugs properly immediately, but I was still not accepting of my status.”
Ngosa would continue taking the drugs but refusing his status for another five years.
“Then last year I went to Chazanga Clinic and that’s when I meant Sister Betherida. She encouraged me, she introduced me to the support group, and to other peers who are living with HIV at the facility. She was the first person to help me accept my status.”
Sister Betherida Lukalanga became an HIV nurse practitioner in 2020, having a keen interest in helping others.
“My work has been very interesting! I have learned many things about HIV. It is important to provide stigma-free health care because it improves their health outcomes. For example, if we have young people living with HIV with a high viral load, why? Stigma. They are not taking their drugs because they can hide when they are away from the clinic. But, if we speak to them openly and make it a safe space, they will take their drugs.”
Sister Betherida has a great system in place at her clinic.
“We usually have meetings with support groups. Each young person living with HIV has a turn to speak and share their story. Everyone is encouraged to open up about their status and situation. We have support group meetings every Saturday.”
However, Sister Betherida has also introduced measures to keep the health providers accountable too.
“Before each support group meeting, we have a health provider meeting first. We discuss the importance of not stigmatising people when they come in, and we discuss the negative affects of stigma. We want them to feel free to come to our facility.”
Unfortunately, Sister Betherida, like many other health providers, faces many insurmountable challenges.
“Firstly, the biggest challenge is accepting their status. For example, when Ngosa came, he couldn’t accept his status because of a lack of information. This lack of information is a major issue and leads to the second biggest challenge: stigma. It also often starts with parents. You find that at home, adolescents are told not to do this or that in case they infect people.”
Stigma creates many other challenges for young people living with HIV in Chazanga. The distance between the communities and clinics means excessive transport and transport costs, added to the fact that many transport options will ostracise them for needing to get to the clinic in the first place. Moreover, most young people do not want to be seen going in and out of the HIV clinic, as word spreads and the discrimination increases. They would rather stay at home, saving on transport costs and avoiding the discrimination of their peers.
What made Ngosa’s experience with Sister Betherida so special?
“She educated me and encouraged me to accept my status. Now I am a peer supporter and positively living with HIV. After living in denial for so long, I finally feel like I have a future.”
How does Sister Betherida feel about her nomination?
“It feels great knowing that I am doing the right thing. I pray that I continue to do the right thing, but it isn’t easy. We have many challenges, so it isn’t easy. Sometimes I feel powerless, like when patients are staying at home and not coming to the clinic. I do hope that more people will get involved so that we can improve our services.”
Now that Ngosa is living positively with HIV, what does he have to say to other young people who might be scared?
“When you find out you are HIV positive, you have to accept yourself. The only difference between that and a normal life is taking your treatment every day. You will still have a very normal life.”