TB stigma: are you a hindrance to treatment?

I was tired, the sun was scorching hot in the dusty afternoon and I searched for a place where I could rest my tired bones. I spotted a bench outside a building and I quickly allowed my legs to lead me there. I sat on side of the bench under a shadow and heaved a sigh of relief.

In a short time I saw a frail woman walking towards the bench holding a large envelope. At a quick glance she looked emancipated and ailing, as if she was suffering from something. She sat beside me and greeted me. I responded indifferently.

“Are you sick?” I asked when I noticed she was breathing with a lot of difficulty.

“Yes!” she answered. “I am just coming from picking my X-ray results.”

“What are you suffering from?”

“I am yet to know,” she answered between bouts of cough which suddenly engulfed her. She removed a very dirty handkerchief and spat in to it after which she proceeded to wipe a thin bead of sweat that trickled on her forehead.

“For how long have you been coughing?” I inquired from her.

“It is now more than one month and all the medicines I have taken have not helped.”

“Do you sweat a lot during the night and have you experienced some weight loss and loss of appetite?”

“Yes.”

“Do you get feverish?” I asked and she nodded her confirmation.

During our conversation I realized I had subconsciously covered my nose and moved a bit further from her because in my mind a warning bell had just rang warning me to stay away. It was instinctive –an urge for self preservation – but a pathetic way to handle such a situation and I knew right then that I had to do the right thing.

All the symptoms were clear, I am not a medical doctor or a health care personnel but I am a TB advocate who has worked with people suffering and who have survived both tuberculosis and multi drug tuberculosis. That instance before I realized I was in the wrong, that moment that came and made me pull away, was the lowest moment in my life; the lowest I have ever sank. Despite knowing most of the facts about TB and how it is transmitted I was afraid. Afraid that being close to her would have me infected.

Realising what I had done, I moved back nearer to her and I started telling her about TB, how to go about treating it. At the end she left with my number and I told her to call me any time and gave her advice to go to the TB clinic at Kenyatta the following day.

TB is an infectious bacterial disease caused by Mycobacterium tuberculosis, which most commonly affects the lungs. It is transmitted from person to person via droplets from the throat and lungs of people with the disease. Over the years, the number of TB cases in Kenya have stabilized and declined and according to the latest World Health Organization’s (WHO) Global report 2011, Kenya ranks 15th on the list of high burden TB countries in the world and the fifth highest burden in Africa.

It is surprising that over one hundred years since the disease has been with us people, even the ones who are aware of the facts, still treat TB with a lot of stigma, misconceptions and fear. People are still ignorant of what causes TB while others choose to be indifferent to it altogether

My experience came in the wake of World Tuberculosis Day (24 March), a day when Evelyn Kibuchi the KANCO TB Manager and other TB advocates wore masks and took to the streets of Nairobi to teach and educate people about TB and the stigma related to it.

Stigma, unlike TB, has no cure and the only way to cure stigma is to face it, which will help avoid or prevent it. What I did was an element of stigma.

According to Ms Kibuchi, stigma is one of the major causes of TB patients seeking delayed treatment. TB patients need to overcome stigma, especially self stigma, and seek early treatment in order for it to be effective and prevent normal TB from evolving to multi drug resistant TB.

We all have a role to play if we are to eradicate stigma in TB. We should try and overcome the misconceptions we have because only then shall we stop being a hindrance to the fight against stigma.

I am glad I moved back to Teresia (for that was the name of the lady) and I started to tell her all what I knew about TB. I guess facing up to my fear was the right thing to do and writing this story means I am just human; capable of making mistakes and learning from them.

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