Seema Bali: Coping With Disease And Debt While Raising A Family In India

A special project celebrating the fifth anniversary of “Our Views, Our Voices” | Learn more

Seema Bali
Seema Bali

In March 2011, Seema Bali, a mother of two from India, was recovering from a hysterectomy. However, just as she went back to work, her husband Anand’s health suddenly deteriorated. In the following months, this crisis forced her to assume the role of caregiver, in addition to the ones of the family’s sole breadwinner and parent looking after her children.

Bali shares her experience in the NCD Diaries project, an initiative launched by the NCD Alliance and people living with NCDs.

NCDs (noncommunicable diseases) are the first cause of death and disability worldwide, accounting for 74% of all deaths. Among many others, they include cancers, cardiovascular diseases, stroke, chronic respiratory and kidney diseases, diabetes, and mental health and neurological conditions – all conditions that are not transmissible from person to person.

In the case of Seema’s husband Anand, it was not immediately clear what was causing his problems.

“He had lost some 17 kgs of weight in two months, he had come down from 87 to 70,” she writes. “He was experiencing loss of appetite and was generally very sleepy, sleeping for 22 hours a day.”

When they met with a doctor, the physician thought that Anand was suffering from depression and put him on antidepressants. After two cycles of antidepressants led to no improvement, Seema insisted on a full checkup.

The tests revealed that Anand’s kidneys had shrunken and were not functioning correctly.

“My legs just turned into jelly, and I just sank into the sofa,” Seema recalls. “For that moment of time there was total blackout.”

Because her husband had just relocated to India from Dubai, he did not have any health insurance which meant that they would need to cover the cost of treatment out of pocket.

Seema knew there was nothing to do but face the situation. Anand got his fistula fixed and started dialysis as they were exploring options for a transplant.

“When Anand had dialysis, I used to accompany him and take a day off from work,” Seema says. “On the days when he did not have dialysis, he used to be at home, and I used to go to work.”

NCDs have a disproportionate impact on people living in low-and middle-income countries, and are both a cause and a consequence of poverty.

The Bali family was no exception.

Every session of dialysis for Anand would cost over 3,000 rupees, which amounted to 48,000 rupees in a month.

“My salary was 50,000,” Seema remarks. “There was no help available. I did not know which door to knock on and I had to take all of our savings.”

Life, she says, became “a rollercoaster ride for me because it was hospital, home, school, kids, shopping essentials, looking after the education of my kids, visit to the bank, take out money, go to the hospital. So it was like a vicious circle I was into.”

As a result of the situation, Seema developed psoriasis and mental health issues herself.

“It was devastating and heartbreaking, but I had full faith and trust in God,” she recalls. “And I was waiting to come out of this, thinking that maybe the transplant thing could happen.”

Indeed, one day the hospital called the family to inform them that there was an available kidney for Anand.

“I called my family and my husband’s family and quickly we got the act together, we deposited the money and he was admitted to the hospital because the doctor said that the procedure had to be done on the same day,” Seema recalls.

The operation was successful. After ten days, Anand was discharged from the hospital.

“I had converted our room into an intensive care unit,” she explains. “I had to be on my toes 24/7 and there were some hiccups. We tried to deal with it. Postoperative care is really crucial and critical.”

However, while Anand was physically recuperating, he was also becoming mentally unstable, worried about his job, his future and the children.

Seema struggled but continued to manage.

“I feel like a machine that wakes up at a specific time and works by the clock,” she says. I cannot travel, I cannot attend functions. Social life is highly compromised and it affects my mental well-being really hard. Overall efficiency at home and performance at work also get badly affected.”

“Nobody signs up for something like this,” she notes. “But when we actually face these kinds of situations, why is there no help?”

Read Seema Bali’s full NCD Diary.
Read previous post.

Image Credits: NCD Alliance, Courtesy of NCD Alliance.

Combat the infodemic in health information and support health policy reporting from the global South. Our growing network of journalists in Africa, Asia, Geneva and New York connect the dots between regional realities and the big global debates, with evidence-based, open access news and analysis. To make a personal or organisational contribution click here on PayPal.