By Lipi Mehta:
On a hot August morning in 2014, I reached Dharavi in Mumbai at around 11 am. I waited outside for Govinda, a Program Manager with NGO Operation ASHA, who heads a team of community health workers. He and his team work towards the treatment of TB patients in the area, known as one of India’s ‘TB hotspots’. This is of course firmly away from the more glamorous part of Mumbai – that of film stars and celebrities. Here, concerns are a lot more basic. Like how Govinda arrived on his bike and asked if I had my N95 mask ready before we went in to interview TB patients and their families. The mask is a great preventive measure against the disease and in fact, all health workers must wear it, but since it was the first time for me, I felt uneasy. “Won’t it seem like I want to maintain distance from them if I am wearing the mask? Doesn’t it create more stigma?” I asked Govinda. “Don’t worry madam, they are used to it,” he replied.
As we entered the slum, the sunlight was suddenly cut out. We walked on jute bags, bricks, loose stones and anything else that was available to avoid stepping into the drain, somewhat a perennial presence cutting across Dharavi. One of the first houses we visited was of 8-year-old Anjali’s. She had just recovered from thyroid TB. Govinda told me that she had a nodule on her throat but her parents hesitated seeking treatment because of what the neighbours would say about how their daughter had become ‘deformed’.
I spent just over two hours in Dharavi that day, and those few hours were enough to make me wonder, on my way back home, as to how terrifying the situation of TB is in India. In a country with the highest number of TB cases in the world (23%), where treatment should be the need of the hour, social stigma is a prime factor that deters people. TB is normally cured in 6 months to 2 years but social stigma? It sticks on with patients being identified as ‘that person who had TB’ even long after cure.
One of the most dangerously propagated ideas is that “TB patients are a bad omen”. In fact in some places in India, a person infected with TB is considered ‘unlucky’ or even associated with witchcraft. 40-year-old Kumar Pal, an Indian street-food vendor, spent weeks in bed in isolation, during his TB treatment as he was completely abandoned by his family and friends. And such social isolation doesn’t only cause loneliness, it leads to depression and can even shorten a person’s lifespan. Cases like Pal’s prove that the mental trauma that society inflicts on a patient far outlives the physical pain that TB causes.
And that’s not it. There is also the fear of what others will say if patients reveal that they have TB. Take for instance Uttar Pradesh’s Fatehpur district, where chronic TB is a silent killer. I accompanied my former boss and a crew to a few villages where house after house, TB patients recounted government apathy and social stigma as reasons for not seeking treatment. The stories of Fatehpur’s patients are also reflected elsewhere in India. Mahmood, a rickshaw puller from Mumbai refused to seek treatment on similar grounds. And down south, “People are ready to die without taking medicine because they won’t share with neighbours their TB disease,” writes CM Munegowda from the Institute of Public Health, Bangalore.
There is a large section of TB patients who suffer in similar ways, not just because they have the disease, but also because they happen to be women. A case study by the Indian Red Cross Society states that as many as 100,000 women are rejected by their families each year because of TB. Deena, a social worker says, “If it is a girl of marriageable age, her condition is hidden from potential suitors, neighbours and relatives for fear that she won’t get married.”
While many women fear rejection by their families and societies, many Indian men fear losing their jobs. In September 2015, businessman Ratan Tata said at an event in Mumbai that TB stigma “results in discrimination at schools and workplace.” This is reflected in a study by the US National Library of Medicine that statesmen are “concerned with the impact of TB stigma on their economic prospects, which include job loss and reduced income.” This stigma, coupled with the pressures of ‘being a man’ in Indian society can even lead to alcoholism and intimate partner violence.
It is important to remember that we as a society are doing far worse to TB patients than the disease actually is. We don’t flinch before perpetuating this cycle of stigma and shame. Yes, the TB burden in India needs to be heavily reduced in terms of the number of cases. But this can’t happen without first tackling the hellish situations we are creating for TB patients every single day.