Voices of Tuberculosis - A booklet on narratives of the patients on living with TB

Tuberculosis patients and their families have stories to tell about their struggles, social stigma and the resilience 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 counsellor 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 weight 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. 

Advised to have better nutrition Mala says "where do we get enough money for food? There is virtually nothing given by the government to drug-sensitive TB patients." Then there is the story of Mumbai-based tailor Owais. He is a 37- year old, and lives in a one-room tenement in Dharavi battling injection-induced HIV, MDR and XDR TB. He was one of the first people to be given Bedaquiline, one of the few drugs remaining to treat multi-drug resistant TB, in India. The drug had terrible side effects: "I felt like my body was on fire. I would get up in the middle of the night to bathe. Sometimes I couldn't sleep for days. It was unbearable," Owais recalls.

In September 2013, he finished the Bedaquiline course and his tests came back completely clean. Despite this, Owais kept taking category three drugs because of the previous reappearance of the disease.

In March 2015, he finally stopped TB drugs completely - almost a decade after he began treatment. Unemployed person Zakir-Ul-Ansari, 28, from Howrah, West Bengal, has this to say. "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."

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." TB does not distinguish between the classes. 41-year-old development professional Prabha Mahesh from Maharashtra recounts her own arduous journey with the disease in her 20s.

It began as a small swelling on her neck which soon grew into a large painful one and prominent and everyone knew she had TB and started avoiding her at her workplace, even though she headed the organisation.

"It began subtly when I noticed that I was eating my lunch alone every day," she says. She also recalls her own feelings as a patient and the isolation she imposed on herself. Prabha was treated through private sector with medicines costing almost Rs 40,000 every month. She received no counselling from her doctor but was just told to be careful with her baby. She says she was unware of the government treatement, nor was it ever suggested by her doctor.

She bitterly recalls when she briefly gave up the medication, overcome with anger and frustration at the discrimination at her workplace. "They used to look at me and treat me like I was some infected material. No one would even shake hands with me. What is surprising is that despite a prominent growth on my neck, no one ever asked me about it," she says.

After a year of treatment in 2000, Prabha was cured but she continued to live in fear of the TB returning.