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March 24th is World Tuberculosis Day. The problems of Indian women affected by TB are many – including ill health, stigma and misconceptions.
By Hamsini Ravi
A couple of years ago, homemaker Martha Thoma* from Chennai suffered from spinal tuberculosis. Due to the acute pain it caused, Martha was unable to get up and perform her normal household duties. As she was undergoing medication and recovering at a relative’s house, she found out that her husband had plans to desert her and marry her sister.
As a mother of two children with only a high school diploma and limited job opportunities, Martha felt as if her whole world had come crashing down thanks to her illness. Martha’s story has a happy ending: she recovered in a few months, and thanks to support from her physicians and counsellors at the centre she was taking treatment from, she saved her marriage, and finally went back to living with her husband and children.
M. Deenadhayavari, a Social Worker at Resource Group for Education and Advocacy for Community Health (REACH) who helps tuberculosis patients in and around Chennai, says that Martha’s case is just the tip of the iceberg. A story in a popular television channel in July 2010 showed that every year, more than one lakh women are thrown out of their homes in India because they are affected by tuberculosis.
Yet another study revealed that 15 percent of women tuberculosis patients were shunned by their families. Deena has encountered several such hostile relatives of patients. He says, ”I have been told by many women patients not to come to their house, or to not reveal my true professional identity, simply because they don’t want their family members and neighbours to know.” Many women patients prefer to meet their Directly Observed Therapy (DOT) provider in a public place outside home. ”They don’t mind taking the extra effort and paying to travel long distances to avoid their households from knowing about their condition,” Deena adds. This phenomenon spans women of all age groups.
“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. For a married woman, it is about anticipating harassment from her in-laws and husband, and fear that her marriage is at risk, or potential domestic violence. Older women fear that their children’s marriage prospects are endangered,” Deena elaborates. Tuberculosis is not hereditary at all, and this message is often the crux of major education and advocacy campaigns.
Tuberculosis is not hereditary at all, and this message is often the crux of major education and advocacy campaigns.
Akhila Ram*, a Communications professional, who recovered from tuberculosis a few years ago has a slightly different story to tell. She affirms that this stigma towards tuberculosis, especially if you’re a woman, transcends class. ‘”People thought my condition (spinal tuberculosis) was contagious. They used to tell their kids to stay away from me and not eat food from my plate,’ she says. Akhila also talks of instances when friends and family would ask her things like, ‘”How did you land up with this? I thought only poor people get it.” From the stories of these Indian women, it is clear that basic tuberculosis knowledge is lacking across all sections of the society.
P. Vidhya, a colleague of Deena’s at REACH, talks of another dimension to women and tuberculosis. “I have noticed among male patients, that there is almost always someone to take care of them, and ensure that they’re on the right path to recovery. But with women, this is hardly the case. They’re often left to fend for themselves, and don’t get the right kind of care,” says Vidhya.
Since many tuberculosis patients come from weak socio-economic groups, a lot of cases (particularly among women), go undiagnosed or untreated, because of financial burdens. “This is also because women are primary caretakers of children and elderly people,” she adds. It is also worth pondering over the fact, that in India, while two-thirds of tuberculosis cases are males, women in the reproductive ages of 15 – 44 are most vulnerable to the disease.
A WHO- Stop TB Partnership study in 2009 determined that TB is the third leading cause of death worldwide among women of reproductive age. Pulmonary and genital tuberculosis have the potential to cause infertility and chronic reproductive illnesses. Dr. Nalini Krishnan, Director, REACH, emphasises that early diagnosis and treatment can go a long way in mitigating fertility and allied reproductive illnesses. She cites the example of a 25-year-old patient who delivered a healthy baby a couple of years after recovering from tuberculosis.
…in India, while two-thirds of tuberculosis cases are males, women in the reproductive ages of 15-44 are most vulnerable to the disease.
It is not that men are completely shielded from gender-related stigma. The word tuberculosis conjures up images of a skinny man coughing – and this stereotype works its way into male egos. While Indian women face an integrated combination of violence and abandonment, men tend to feel less macho, due to their inability to contribute to the family’s income. The RNTCP 2011 Annual Status report stated that on an average 3 – 4 months of work is lost as a result to tuberculosis. This results in a loss of 20 – 30% earning potential of the household income.
It is worth noting that the RNTCP Annual report has no concrete numbers or statistics on gender and tuberculosis, or even a sex-wise split. Gender sensitive tuberculosis programming in India is the exception rather than the norm, and this needs to be rectified. Tuberculosis may physiologically, socially and psychologically pose different challenges to men and women, and the India specific challenges are even more underlined with nearly 2 million people getting infected and around 330,000 Indians dying of the disease every year.
*Patient names changed on request
*Photo credit: Gates Foundation (Used under the Creative Commons Attribution License)
Why would anyone encourage Martha Thoma to get back to her abusive husband?! Is that really a solution to her problems? What if she breaks her leg tomorrow and he decides to marry her best friend? Sheesh! Our “solutions” are just band-aids. We’ll never fix the real problems we women face!
Just to clarify, I am not frustrated with the author. Thanks for this article and shedding light on yet another injustice.
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