Testing positive for HIV in Kenya: a personal story
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Testing positive for HIV and TB in Kenya
HIV stigma is very real in Kenya, which is why many people who test positive for HIV keep their status a secret.
A single cough is how my journey started. Over time it became more persistent; not even responding to cough syrup. At the casino where I worked, my performance deteriorated. I was rapidly losing weight, but I was scared of not going to work as I had no excuses for being absent, apart from my health.
I was avoiding any opportunity to hang out with my friends. But it didn’t take them long to notice. It was as clear as day. I was suffering; something was eating me up, inside and out. My mother couldn’t but help see what I was going through either. She continually and persistently said I should go for tuberculosis (TB) screening. I pushed her and the idea away. I didn’t want to believe I could have TB. I mean, how could I?
“I am perfectly healthy,” I kept repeating to myself.
But the truth was, I was lying to myself.
My instincts told me I didn’t have TB; they said to me. Instead, they said, you have HIV. But who listens to their instincts? No me. I just wasn’t ready to accept it. I was terrified of my family and friends rejecting me if I had HIV. I couldn’t bear the idea of my sister looking at me differently. So, instead of telling myself the truth, I continued to live in denial. At any cost, I wanted to avoid any uncomfortable conversations about my health.
Coughing in a crowded matatu bus
On a Friday evening in late October, I was sitting on my usual bus heading to work at the casino. I remember the evening well. A single cough turned into an uncontrollable coughing fit. People on the bus moved away from me, recoiling in disgust. I could see the fear in their eyes. They felt they could be infected by whatever I had. I looked out the window, silently crying, staring at the carpet of purple-blue jacaranda flowers wondering if I would see next year’s bloom.
It hit me hard that day. My mother could have been right about tuberculosis. My fear of a scary life-changing diagnosis and people running away from me was becoming real.
“None of these people knew me,” I thought. “What if they did? How intense would the isolation feel? Would it hurt more than it does now?”
I knew right then that I couldn’t avoid the screening. I had to know what was eating me up inside. I needed to feel whole, perfect and WANTED.
Facing the truth: testing positive for HIV and TB
The health clinic was my first stop after work the following morning. They checked me for HIV and TB. Both tests came back positive.
I felt like a dead man walking; nothing made sense anymore. My world fell apart. A million questions ran through my mind. I had no answers. The next couple of days I spent crying in self-pity and denial. And still lying to my family. I did not know if I could go on.
I needed to talk to someone, so I went to see my uncle. He’s a nurse and has always been my confidant since I was a young girl. My much older brother. I wanted him to be the one to give my parents the news, especially my mother. I didn’t have the heart to tell them myself.
I also needed a signature to be put on ARV and isoniazid treatments. At the clinic, I went to I had had an additional signatory to access treatment. The signatory agrees to be the point of contact in case I stopped attending the health clinic for regular check-ups, or failed to show up to collect my medication. Thankfully my uncle offered to help me with both cases.
Testing positive for HIV and TB in Kenya brought stigma and isolation
Testing positive for HIV/AIDS in Kenya can bring stigma and isolation. I talked to uncle about my fears. He assured me all would be well and, if I did everything right, I wouldn’t have to deal with those fears or worries. He would help me to talk to my family.
It’s been five years now since I was diagnosed: my TB is cured, and I have learned to live with being HIV positive.
I still get scared about who to tell (and who not to tell) about my HIV and TB. Stigmatization is very real, and I fear being treated differently if people knew the real me. Before disclosing my status to anyone, I talk about HIV in the vaguest of terms – always hypothetically – just to gauge their view. By being careful, I have minimized my risk of being stigmatized. Very few people know I’m HIV positive, and the handful who do know have been supportive.
Research by Avert shows stigma and discrimination continue to hamper people’s access to HIV prevention, as well as testing and treatment services. This, in turn, fuels a cycle of new infections. This is why I decided to share my story at Uncomfortable Revolution. I hope that anyone reading this will try and think of what it is like to be me; a person living with HIV scared of what others might think. And, if you think you might have HIV take the difficult step of seeking support and getting tested. I share my story so you can hopefully find love and acceptance in your community.
HIV is a virus, not a death sentence. I have controlled the virus by following through with the ARVs and whatever other medication my doctor prescribed. This has helped me lead a normal life, even after the diagnosis. I have a beautiful daughter: she tested negative at birth and is perfectly normal and healthy.
Testing positive for HIV in Kenya was not the end of my life, not testing positive for TB. It was but the beginning of a new chapter.
Akinyi Mbuya is a Nairobi-based writer sharing ideas on creativity, uncomfortable health talks and life in general.