Finding out you have HIV can be a shock. But a diagnosis should not deter you from living your life. The virus is followed by stigma and has a reputation for claiming lives. But through education, acceptance and a little understanding, decisive change is possible.
This is the view of HIV/AIDS activist Tebogo Mothoana, who recently went viral after sharing his testimony as a person living with HIV.
The psychology student from Bloemfontein says that he had gone for a routine check-up when he was diagnosed with the virus.
He was 25. “It was just routine healthcare testing; I had the flu and had a terrible headache. The results changed my perception of the world forever.
“When you go to the clinic when you suspect something is wrong, you prepare yourself mentally, but when you go innocently, it’s a different story.”
By the time of his diagnosis, the virus had progressed. “I discovered I had HIV and it had progressed to AIDS. My immune system was severely compromised, as evidenced by my CD4 count, which was 175.”
A CD4 count (cluster of differentiation 4) is typically reported as a count of cells (cells per cubic millimetre of blood).
Living in stigma
“I remember standing there, afraid and unable to move or process because I had not prepared myself for this reality.”
He says HIV isolates you. and it makes you feel alone.
“HIV is a very stigmatised disease.”
“It takes that feeling of belonging away from you. And you are constantly flooded with thoughts that you will never be loved again. I wasn’t sure how I would deal with it or how I would go about living. My reality now was that I was hosting a deadly virus that everybody fears.”
He found his own comfort by reaffirming himself. “The most pivotal conversation I had with myself was when I told myself there is life after testing positive for HIV.
“I had a mantra where I would tell myself, ‘It’s ok, I will get through this.’ I know it sounds a bit cliché, but it got me through the most difficult times of my life.”
A dramatic shift
The diagnosis meant that he was forced to re-evaluate his life. “Because I was infected with HIV and AIDS, I knew I had to make changes, no matter how unpleasant they were.
“My way of life shifted dramatically. I had to give up a lot of things, including drinking and smoking, which was something my doctors advised me to do because I was also diagnosed with tuberculosis at the time,” he says.
“I ended up joining the gym because the doctors warned me that the treatment would cause me to gain weight, so it was critical that I adopt a healthy lifestyle, including jogging, to keep my health in check.”
Dietary changes included a lot of vegetables and water. “I was advised that drinking plenty of water is critical because ARVs are potent medications that can harm your kidneys if not properly hydrated. It is critical to include water in your diet because water helps regulate and maintain our health.
“Healthy food was in check since my mother was highly involved in taking care of me and making sure that I was healthy,” he says.
Mothoana says that living a healthy lifestyle is now second nature to him. “It took some time for me to adjust to my new lifestyle, but I can confidently say I have everything under control now,” he says triumphantly.
Support was crucial
He says that support is top tier when it comes to the healing journey. “I needed direction on how to navigate these changes. Even though I rely on myself for most things, I needed help because some things in life are too difficult to face alone.”
His mom was very supportive in his time of need. “She has been a pillar of strength throughout this journey,” he says.
“Share when you’re ready, the world is unkind. I didn’t disclose my status to the rest of my family until I was ready.”
“The problem in disclosing your status for external validation or acceptance is that you might encounter a setback because the world won’t accept you the way you are,” Mothoana cautions.
“The moment you do not fit into what society defines as correct, you are labelled and placed into a category that restricts your identity as an individual,” he adds.
Failed by a cold healthcare system
Mothoana believes the HIV counselling offered at the time of diagnosis feels scripted and impersonal, and that at a time when people most need support.
“A person’s life changes dramatically when they learn they have HIV. The treatment they will have to undergo, the side effects they may experience, the dietary adjustments and their overall lifestyle will all alter dramatically because of the news they receive; therefore, it is crucial how this conversation is manueuvered,” he says.
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.”
He advises that it is important to have someone to talk to or go to therapy but the more you talk about it the less alone you feel, ready to take on life again. “Do not rush to be okay, healing is a process. Today you might be fine, tomorrow you take ten steps backwards but ultimately you will be fine.”