New Delhi: Tuberculosis patients and their families have stories to tell about their struggles, social stigma and the resilence of surviving or succumbing to the
disease that has come to be recognised as one of India's severest health crisis.
Now these stories, from people from all walks of life, including rag-pickers, housewives, garbage collectors, tailors and other everyday professionals have been collated into a booklet by health activist Chapal Mehra. The small book 'Voices from TB' is supported by the Eli Lilly Foundation.
"We know much about the impact of TB on society. Yet, rarely, do we hear from those most affected by TB - namely patients and their families. After all, surviving an infectious disease like TB is both an individual and a social experience. Despite this, the TB narrative in India is dominated by experts and doctors," says Mehra.
He says stories of TB affected are not just their own stories but narratives that provide information on how patients interact with doctors, health systems in families and communities. Mehra recounts how when the project was conceptualized they wanted to understand the lived experience of individuals
or families affected by TB. "The objective was to document their fight with TB located within families and communities."
It was also to break stereotypes of the TB affected as suffering and powerless individuals. For the booklet Mehra says he travelled across the country and got a group of young photographers to click the pictures. One of the featured stories is about Nurjahan, a 28-year-old housewife from West Bengal who was diagnosed with drug sensitive TB in 2008 and again in 2010.
The Multi drug restistant TB (MDR-TB) is often hard to treat and the treatment is hard to tolerate. Nurjahan recalls, "Sometimes my whole body would break onto small rashes and my stomach would burn for months." Nurjahan has now been on treatment for almost four years for a disease that is usually cured within six-24 months. In her last month of treatment, Nurajahan is excited and asks her counseller if she can become a mother.
A waste picker from Chennai, Mala, was discovered to be suffering from drug sensitive TB in 2013 when she started losing wieght started coughing and vomitting. Found positive she was given treatment and counselling at a public health centre, she gave up her son to her mother for care.
"Female patients in India often have to give up their roles as wives and mothers because of TB," says the booklet. 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 her husband too tested positive for TB, it was like straw to the proverbial broke back.
