In 2007, one month after Nandita Venkatesan began her graduate studies in New Delhi, she began to experience severe lower abdominal pain, loss of appetite and weakness. Thinking it was a viral fever, she consulted a doctor, who agreed with her. But weeks later, as the symptoms showed no sign of abating, a specialist discovered Venkatesan had tuberculosis (TB).
It wasn’t the most common type of TB, which affects the lungs. Venkatesan, now 26, was suffering from intestinal TB, a rare type of extra-pulmonary TB that is usually contracted by consuming uncooked meat or unpasteurized milk.
Like millions of Indians who are infected with TB every year – the country accounts for more than a quarter of the world’s TB cases and deaths – Venkatesan began a 15-month-long regime of swallowing 15 pills a day. The treatment worked, but then she was reinfected in 2013. This time, first-line drugs were ineffective. Doctors had no option but to remove part of Venkatesan’s intestine. She endured six surgeries and 96 days of painful injections of Kanamycin – a second-line TB drug – before eventually recovering.
Then one day in late November 2013, she woke up from a nap and the room was silent. She could see her family talking, but there was no sound. Venkatesan had lost 90 percent of her hearing – a side effect of the Kanamycin injection.
And as she was trying to cope with all of the physical trauma that comes with contracting and treating TB, Venkatesan came up against another consequence of the disease, one that medicine couldn’t treat. “When I had TB for the first time, my doctor told me not to talk about it, that it could ‘impact my personal life’ in the future,” she says. “It was an indirect reference to being a lady,” meaning her future marriage prospects.
While Venkatesan was fortunate enough to have a supportive family, other female TB sufferers face persecution and rejection by their families and communities – even if they have completely recovered. Venkatesan has decided to speak out about her struggles with TB in the hope of raising awareness about the stigma that, for many women, can be even more devastating than the disease.
She wrote about her experience on social media and caught the attention of local media. Since then, she says, numerous female TB survivors have reached out to her on Facebook and Twitter, saying they’d hidden their TB diagnosis from their parents because they feared it would mean they couldn’t be married off. While the difficulties of treating TB are well-documented, the impact the disease has on women in particular is largely neglected, she says.
According to Dr. Amrita Daftary, a TB researcher and assistant professor at McGill University in Canada, women with TB in India are far more prone to stigma than men. Indian women often report being isolated and discriminated against in their homes, rejected by husbands and in-laws, or taken off the “marriage market” altogether, Daftary says. “How can it be that a disease that is somehow passable for a man can threaten the social fabric of a woman’s life? TB stigma in women is really a reflection of gender inequity.”
Research shows that the social impact of TB can also delay diagnosis and prevent access to life-saving treatment. “What makes things worse is that [women with TB] depend on the very people who stigmatize them the most – their families and husbands – to take them to the doctor, to purchase medicines, to look after their children. And this dependence disables many women from fighting stigmatization,” says Daftary.
When Deepti Chavan contracted multiple-drug-resistant TB at the age of 17, doctors had to remove her left lung and gave her a one percent chance of survival. After five years of fighting it, Chavan, now 34, is free of the disease.
But following her first surgery, her parents were subjected to relentless questions from their community about her marriage options. “I did think that it might be difficult for my parents to find a boy for me,” she says. “After all, I wasn’t just affected by TB – I lost an important organ of my body.”
But Chavan found love online in 2004 and married in 2011. She says she was so shocked her husband wanted to marry her knowing she’d had TB, her first instinct was to say no. Now she hopes talking publicly about her experience can help dispel the myths surrounding women and TB.
“People assume that if a woman is infected with TB, she might not be able to conceive. People also think that an ill woman is less competent to look after the family,” she says. “We need to emphasize that TB can happen to anyone, [and] it’s a treatable and a curable disease.”
Both Chavan and Venkatesan are members of Survivors Against TB, a movement that’s working to make TB treatment more accessible. They want care that takes into account the challenges women face as they fight the disease, and have petitioned politicians and other stakeholders with a range of recommendations. “We need gender-specific sensitization programs,” says Venkatesan. “We need to educate women about TB and give [them] the confidence to … seek treatment.”
The group also wants the government to scale up the implementation of new diagnostic tests, so that every infected Indian can get an early and accurate diagnosis, and to offer universal drug-susceptibility testing to all TB patients to detect all forms of TB. It also wants the rollout of more national public campaigns to educate communities about TB to help reduce stigma.
But Daftary believes that tackling the issue of women and TB needs an even bigger, broader approach.
“If we want to address TB stigma in India, we need to fight traditional gender roles and expectations, and confront gender inequity head-on,” she says. “We need to engage men, families, indeed entire communities, to raise the status of women.”