Tuberculosis tales: the trials and triumphs of patients

Preeti Mehra | Updated on January 17, 2018

Life in the shadows

Survivors on their struggles, stigma and the little help on medical, nutritional fronts

Cancer survivors have written about their ordeal through the illness and the resolve that pulled them through. But you hardly hear from those who battled it out with tuberculosis (TB) and its worse avatar multi-drug resistant tuberculosis (MDR TB).

And that’s because TB impacts poor, marginalised communities whose voices are not heard. It takes grit to fight this silent epidemic that kills close to a thousand Indians every day.

In an unassuming booklet, Voices from TB, health activist Chapal Mehra captures the trials and triumph of TB survivors. The patients featured here are from all walks of life, including rag-pickers, tailors, the unemployed, housewives, garbage collectors, and everyday professionals.

Each story is more compelling than the other. Some filled with hope, many with despair, but all of them revealing the human spirit.

A waste picker from Chennai, Mala, was married to Vijay, another garbage collector. With infant Tarun in her arms, Mala discovered she was suffering from TB when she kept losing weight, started coughing and vomiting. Her uncle recognised the symptoms and asked her to visit a public health centre.

Found positive she was given treatment and counselling, “but nothing prepared me for this,” she says. Mala's nightmare continued as she had to leave her child in her mother's care. Advised to have her husband and son tested, she recalls, “the hospital was far and the cost of travel was high. The doctor treated us like beggars. We were made to wait endlessly and the doctor spoke to us rudely.”

When Vijay too tested positive for TB, it was the end of the road for the family. Medical professionals kept telling them to have better nutrition, but as Mala says, “where do we get enough money for food? There is virtually nothing given by the government to drug-sensitive TB patients.” Mala and Vijay live under mounds of debt due to the disease. And they have to keep their illness close to their chest so that they are not ostracised by their slum community. “Every time I close one debt, I have to start another,” she says. But Mala is grateful about one thing – Tarun is TB free.

Similarly, Mumbai-based tailor Owais, 37, lived in a one-room tenement in Dharavi. He battled injection-induced HIV, MDR and XDR TB. His inspirations were wife Khursheed and two young children.

Patient Zakir-Ul-Ansari, 28, unemployed from Howrah, West Bengal, puts it succinctly: “When you take medicine for MDR TB – it's a fight every day. If you don't fight this disease, its treatment can consume you.” An embroiderer who lived in terrible conditions in Delhi, coughing was routine, which meant his disease went undetected.

When his health deteriorated, he was forced to come back home and was detected with MDR TB. The last nail in the coffin was all his siblings, save one, severing ties with him. Zakir praises the doctor at Jadavpur, “His counsel gave me the will to fight,” he says, now eager to help others with the disease. “I came back from the dead, I have to help others”.

(Mehra’s booklet is supported by the Eli Lilly Foundation.)

Published on August 19, 2016

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