While older generations of people living with HIV/AIDS set the battlelines against stigma, the modern youth living with the disease have opened up a new frontier in the war. Mmegi Correspondent, NNASARETHA KGAMANYANE finds that the young warriors are slowly winning the war against stigma on social media
For many young people born with the epidemic, the battle against the stigma rages on social media. At the recent Sentebale Second Youth HIV Summit in Gaborone, most young people living with HIV pointed out that they use social media for a positive impact in raising awareness and fight against stigma.
Their stories change many people’s perspectives on HIV and help the affected youth themselves deal with their status.
While the era of HIV being seen as a killer has ended, thanks to various public health interventions, stigma and discrimination persist in Botswana.
People living with HIV are shunned by family, peers and the wider community, while others face poor treatment in educational and work settings. Erosion of their rights and psychological damage are yet other challenges they go through.
The side effects of the strains, in turn, limit the effectiveness of HIV testing, treatment and other HIV services, as those living with the disease or those who believe they may have it, shy away due to stigma.
Saidy Brown, a 24-year South African activist, was born with HIV. She did not know that she was born with the virus until she decided to take an HIV test when she went for a school trip. At the time, she was only 14 years old.
“My results came positive. My whole life changed! I could not cry because I didn’t want my schoolmates to know that I was positive. At the time, there was no counselling. Imagine being given devastating news like that as such a tender age. I however decided to be strong and not break down. I didn’t know where I got the virus from because I was young and not yet sexually active,” she said.
Brown kept her status to herself for months. She later decided to join school drama to keep herself busy. However, things took a different turn in December of that year when the country commemorated a month of HIV/AIDS. The students were given a script about HIV and Saidy decided to share her status with her teacher who later accompanied her to break the news to her aunt.
The young lady recalls that her aunt, who had been taking care of her, said she did not expect that her niece might have HIV even though she was fully aware of her parents’ status. Sadie did not take medication immediately. In fact, she only got on the treatment four years later when she was 18 years old after her CD4 count deteriorated.
“In order to cope with my status, I started writing. My first piece was titled ‘A Letter to HIV.’ I posted it on Facebook. I got positive feedback from many people.
“That is when I got a lot of people following me because they could resonate with me. “I disclosed my status on Twitter. I later learnt to accept and embrace my status. I wanted to change the narrative about HIV amongst people,” she said.
Sadie found that many people could relate to her stories. HIV has changed her life even in the smallest ways like having to rush home in order to take treatment. However, Sadie says life changing does not have to mean life limiting.
Bakang Garebamotho was also born with the disease, missing the Prevention of Mother to Child Transmission Programme (PMTCT) by a few years.
Growing up he remembers having to bottle his feelings in order to avoid being stigmatised. Showing anyone that he was hurt by their remarks would expose the fact that he was HIV positive.
“I disclosed my status in 2018 after joining Sentebale. I then started sharing my story through social media because I realised that youth are very active on social media.
“I was able to help a number of people.
“Each of my posts would reach up to 1,000 people.
“One of them told me that his viral load was suppressed because of the advice I gave him.
“I strive to eliminate the stigma and discrimination against people living with HIV completely,” he said proudly.
Bonolo Selaledi, a 24-year-old living with HIV, made a good decision to enrol for the PMTCT programme when she fell pregnant with her daughter. Through that choice, her daughter was born HIV negative, something that Selaledi will forever be proud of.
“Being born with the virus takes acceptance of one’s status and not just a positive mindset. Having the support group of people who are positive helps overcome the anxiety and fear with discovering that one is infected.
“It is important too to ensure that medication is taken cautiously and with a proper meal plan,” Selaledi says.
She continues: “My advice to young people living with HIV is that being HIV positive does not have to define who you are, or dictate how you live your life. Do not limit yourself. Self acceptance is crucial as you cannot ask the community to accept you, while you have not accepted yourself.”
LYL Sentebale advocate, Boitshepho Maribe, said the NGO has been touring different schools especially in remote rural areas, reaching out to young people and sharing the experience of living with HIV.
The visits have shown that young people in rural areas need knowledge about HIV and living with the disease.
“A lot of them did not believe that we are living with the virus. We also learnt that students in remote areas were facing a lot of challenges.
“Some of them were raped by their parents and/or close family members. Some were even chased out of their homes. We however advised them to say no to incest and not be afraid to say no. We encouraged them to speak out,” she said.
According to Maribe, the rural visits have also shown that the rates of teenage pregnancies in remote areas are high. Sentebale LYL advocates have made a pledge to address this and during the visits a pact was made with the teen mothers that they would not to fall pregnant again before completing their studies and becoming independent.
“This is not easy because some students keep voluntarily going back to the perpetrators because they rely on them for financial support.”
Sentebale’s Co-Founding Patron, Prince Seeiso Bereng Seeiso of Lesotho says young people have huge potential and the NGO is fully committed to giving them the space and resources to take charge of their destiny with regards to fighting the spread of HIV.
“Clinical data at both global and national levels indicates that adolescents and young people are most affected by HIV with the highest number of new infections recorded in this group.
“We believe that it is time for young people to be given an opportunity to guide the interventions that would have high impact for their demographic cohort.
“This is so because, all programmes designed by adults in the past have not yielded the desired results,” he said.
A new approach to fighting the disease and the stigma is needed and the youth are stepping up.