On episode four of Sisters Without Shame we are joined by Tebogo Mothoana, an HIV/Aids activist from the Free State. The Bloemfontein native speaks candidly about his experience living with the treatable chronic illness.
After being diagnosed with HIV/Aids at the age of 25, Mothoana took to social media to spread awareness, detailing his journey with the virus.
“HIV comes with the reputation of claiming lives. The stigma attached to it doesn’t help either. By educating and accepting the virus, we will contribute to an acceptance and understanding that will bring about decisive change,” he says.
The effect of stigma and discrimination fuels feelings of loneliness and isolation in long-term survivors of HIV. Mothoana highlights the importance of a stable support structure in his journey.
“Being diagnosed with HIV/Aids forces you to re-evaluate your life. I rely on myself for a lot of things but I needed help because some things are too heavy to face alone. My mother has been there every step of the way.”
Picking up the pieces
By the time he was diagnosed, the virus had progressed to Aids.
“My immune system was already severely compromised as my CD4 count was 175, below the compromised level.”
A CD4 count (cluster of differentiation 4) is typically reported as a count of cells (cells per cubic millimetre of blood).
Sometimes results are expressed as a percentage of total lymphocytes (CD4 percent). A normal CD4 count ranges from 500–1200 cells/mm3 in adults and teens.
So, Mothoana had to take action. Dietary changes included a lot of vegetables and water. “I was advised that drinking plenty of water is critical because these are potent medications that can harm your kidneys if [they are] not properly hydrated.
“I ended up joining the gym because the doctors warned me that the treatment would cause me to gain weight so it was critical I adopt a healthy lifestyle,” he says.
Stigma is deeply ingrained in people’s beliefs. “Stigma is like racism.” He explains that it’s easy to teach people to love but teaching people to unlearn toxic behaviour is something that is nearly impossible.
Education plays a pivotal role in eradicating the stigma attached to HIV.
Safe sex practices, PREP (post-exposure prophylaxis), a treatment plan and support groups are conversations that we need to normalise.
“Normalising these conversations can help reduce or lower the likelihood of contracting the virus and spreading it unknowingly.”
‘Our health system is cold’
He highlights a major challenge in the healthcare system when dealing with HIV patients: A more sincere and humane approach is required and patients should be treated as such.
Mothoana believes that the HIV counselling offered at the time of diagnosis feels scripted and impersonal. This at a time where people need support the most.
He explains that a person’s life changes dramatically when they have been diagnosed with HIV. The treatment plan they will have to undergo, the side effects they may experience, the dietary adjustments and their overall lifestyle are altered dramatically as a result of the news they received.
How you manoeuvre this, is crucial, he says. “Don’t rush to be okay. Healing is a process.”
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