No room for illness: For poor women in India, cancer is an existential crisis

Cancer comes at a cost. For women coming from lower economic strata in India, a diagnosis can reveal faultlines within the family as poverty forces members to recalibrate their priorities, often pushing the woman’s needs to the sidelines.

At the age of 52, Muthamma Palani found herself in a similar situation. The resident of Salem in Tamil Nadu was dependent on the money her two sons and daughter-in-law sent from Dindigul every month. She also earned a living working as a house help. 

This arrangement worked just fine until suddenly in her 50s, Palani started coughing up blood. After long delays, checkups revealed that she had stage 2 lung cancer. 

“I have three grandchildren who go to school. That’s as many more mouths to feed. My sons continued sending me money, but I knew that I couldn’t expect anything more from them,” Palani tells HerStory.

Finally, her employers stepped in to help her with checkups, chemotherapy, and post-treatment care. However, during the course of the treatment as well as in remission, Palani found herself mostly alone.

She also continued going to work to keep up with treatment and transportation charges to the hospital. 

“It has been three years since I have been declared cancer-free. But, I’m aware it can always come back, and the dread of dying alone hasn’t left me,” she says. “It’s the scariest feeling in the world.”

While cancer patients in India face healthcare challenges in terms of limited access to routine checkups and preventive screenings, women have to additionally navigate rigid societal barriers and economic constraints. A lack of cancer awareness and early detection compounds the problem.

A 2018 survey conducted by Dr Nitin Gangane (former Dean of Mahatma Gandhi Institute of Medical Sciences) found that among 1,000 rural women in the Wardha district in Maharashtra, one-third of the respondents had never heard of breast cancer, and fewer than one in ten women in both rural and semi-urban areas were aware of breast self-examination.

Living with stigma

Another study by the Research Triangle Institute, exploring the stigma around cervical and breast cancer in Karnataka, found that a cancer diagnosis was widely perceived as a death sentence, fostering hopelessness, withdrawal, and a sense of inevitability about disability and mortality. 

“One of our most pressing challenges has been seeing this stigma extend to disclosure concerns. A disturbing majority of women we work with hesitate to share their diagnosis due to fear of social rejection, which in turn delays crucial medical treatment,” says M Arun Kumar, Founder of Thenmozhi Memorial Trust, an NGO supporting underprivileged cancer patients in India through fundraising, hospital visits, and preventive screening camps. 

Thenmozhi Trust runs a ‘mammogram bus’ across Tamil Nadu’s semi-urban and rural areas to conduct free screenings for women. The initiative has reached over 1,000 women, but this is still a modest number, says Kumar.

“We find breast and cervical cancers to be the most common among the women we reach out to. But prevention is almost impossible because they are too scared and embarrassed to come for screenings. They may encounter symptoms—a lump in the chest or body pain - but they don’t tell anyone—not their parents, husbands or children,” he notes. “By the time they start seeking treatment, the cancer is almost terminal, and their families cannot care for them. They are eventually sent to a hospice.”

These challenges are further aggravated for women who, while battling the disease themselves, also shoulder the responsibility of caregiving within their families.

A few senior women who Thenmozhi Trust worked with were abandoned by their families owing to the deeply entrenched misconceptions about cancer. Many feared casual transmission, believing cancer could spread through physical contact, leading to social isolation. They faced blame for their illness and were accused of past misdeeds or unhealthy lifestyle choices. 

Among the factors making women’s cancer journeys painstakingly lonely is also economic vulnerability. Treatment often starts with a few days of admission in the hospital and then repeating cycles of chemotherapy—which means they must travel from villages to the nearest city with a big government hospital every few days. While the men—being primary breadwinners—cannot afford to take leave from work, the woman cannot travel alone. 

“In such cases, they’d rather not get treated at all,” says Kumar.

Two years ago, Tulasi Singh, a 39-year-old single mother from Jalpaiguri in West Bengal, was getting treated for stage 1 breast cancer at the Tata Memorial Hospital, Mumbai. She was staying at the Gadge Maharaj Dharamshala—a subsidised hostel near the hospital— where she found a new home among a community of women cancer patients helping and attending to each other’s needs.

Singh had just started rebuilding her life after leaving an abusive marriage. Her new “family”—the people whose house she worked in—supported her in educating and taking care of her child while she spent 17 months at the hostel, getting treated.

Observing the battles of those around her, Singh helped them register their cases, cooked nutritious food for them, helped them get medication, and travelled with them for checkups. When hospital protocols required a companion for chemotherapy sessions, Singh enlisted fellow caregivers from the hostel, creating a community and a shared sense of struggle.

“I’ve watched people die in palliative care while I was feeding them. I see women who spend their lives afraid or even suicidal. Because cancer for women like us is isolating. I was determined to break through their shame and show them a world of possibilities and choice—mainly because I needed that for myself too,” says Singh, who, even now, after her treatment is over, makes it a point to clean the bathrooms and the beds when she visits Gadge Maharaj Dharamshala. 

“As women, we are made to feel guilty about everything. I am determined that I will make as many women going through these worst times of their lives fight back, unlearn all that guilt and shame and emerge as independent, proud women with agency and dreams,” she says.