Stigma, Guilt, Delayed Diagnosis: A TB Survivor’s Painful Battle

(For World Tuberculosis Day, The Quint is posting a series of articles to raise awareness about the disease, including actions to address stigma, discrimination, marginalisation and overcome barriers to access care.)

“Five years ago, I was at the peak of my life.” A 28-year-old architect Debashree sits in the living room of her home in Pune on a Sunday afternoon, surrounded by her family, as she thinks back to herself in 2011, a newly graduated architect, eager to move from Pune to Ahmedabad to start her first job.

Debashree fell ill within a month and was diagnosed with multi-drug resistant tuberculosis at the first test. She was resistant to three of the four drugs in the standard four-drug kit prescribed, and her condition continued to worsen.

Within just six months, x-rays revealed the severity of the situation. The entirety of her left lung was destroyed, and the other lung was infected as well, which her doctor did nothing to try to save.

A Series of Oversights

I used to vomit bowlfuls of blood, and the doctor used to just tell me, ‘No, it happens.’

This was just the beginning of a series of oversights by doctors and lab technicians; the people Debashree’s family put their trust into. “You don’t question a doctor, right?” Debashree reflects resignedly.

Lacking the strength to do anything, Debashree spent her days sleeping till late in the evening. Her grandmother helped her while her parents were at work. The physical toll the disease took on her body began to affect her mental health as well.

What happens is that you get so frustrated that you are in these four walls, you don’t have the energy to look outside the window also, forget seeing another person. Within two or three months, I had gone literally mad.

The drugs also caused mood swings, affecting her mental balance.

She was prescribed injections three times a day. These injections ultimately saved her, but were excruciatingly painful. Debashree had a nurse who took care for her. “I used to cry, and she [the nurse] used to cry with me.”

The nurse is present with the family this afternoon, and looks at Debashree fondly, reflecting on how brave Debashree was. It is clear that though she no longer works as her nurse, she remains a part of the family.

Debashree also felt wracked with guilt and helplessness about things that were far out of her control. (Photo Courtesy: Rohit Saha)

Battling Guilt and Helplessness

A dreaded side effect of the injections was a loss in speech and hearing that made Debashree feel even more isolated. Her younger sister was the only one who managed to communicate with her, using sign language.

I used to take my sister with me when I used to meet my friends, and ask her to sign to me what they are saying, so that I can understand at least that much. It’s just those small five minutes of human interaction that you need, especially when you’re just sitting at home. For five years, I’ve been at home.

Debashree also felt wracked with guilt and helplessness about things that were far out of her control. At her lowest point, she remembers thinking,

I don’t mind dying, as long as they [my family] are put out of their misery of trying to find a solution to this problem.

Because doctors failed to advise the family on how TB spreads at home, her younger sister also contracted the disease. A guilt-ridden Debashree describes the trauma of the discovery. However, because she was prescribed the right medication in time, her sister was able to make a remarkably speedy recovery.

The Social Stigma Around TB

As though Debashree’s physical and mental fight against the illness and the side-effects of the medication was not difficult enough, she recounts the social stigmas that compounded her suffering. Treatment left her with orange skin that people used to tease her about.

My friends did it as a joke, but it hurt. It’s like you’re becoming abnormal... the disease is changing you so much that you are losing out on even these small things.

Some of her friends avoided meeting her. Debashree recalls, “I told them, you wear masks and come, I’ll wear a mask, no problem. But they said no.” For them, it’s easy to say, but for the patient who’s already facing the disease, when your friends start behaving like that… she trails off.

So misguided are perceptions about TB that there are still people who avoid her, even after she has fully recovered.

The insensitivity and ignorance of her extended family and others exasperated Debashree and her parents. She shakes her head as she recounts.

They used to say things like, ‘Maybe she’s not even a female anymore,’ because my periods had stopped. I was on my deathbed, right.

People would frequently bring up questions about how Debashree would get married and have children. “Is it so important?” Debashree says with frustration. “She’s fighting to stay alive, think of that first.”

Thankfully, Debashree says her immediate family always assured her, “‘Bahar ke log, they can say what they want, but at least we are with you, and we’ll make you stand again.’ And they did.”

After a String of Uninformed Doctors, a Ray of Hope

Though her parents did everything they could, their efforts were often misguided because uninformed doctors and incorrect lab reports led them in the wrong direction. Three years of medication – and Debashree’s condition only worsened.

Her weight continued to drop, and at 28 kg her doctors in Pune wrote her off as a totally drug-resistant (TDR) case, saying there was nothing more that could be done.

Debashree recalls Diwali of 2013, soon after an explosive report on TDR TB in India was published. The usual festivities in the Lokhande household were replaced by a dismal air – and the certainty that she was going to die.

Ready to put up one last fight, the family went to a doctor at Mumbai’s Hinduja Hospital. “When we came to Dr Udwadia, I couldn’t hear, I couldn’t speak. I had to write to communicate, but I didn’t have the energy to hold a pen in my hand.”

Based on reports done at the Hinduja Hospital lab, she was prescribed a new set of medications, including the drug Bedaquiline, a new experimental drug which she managed to receive on compassionate grounds.

Infused with a tiny bit of hope, Debashree said:

I stopped thinking, why did this have to happen to me, and started to focus on getting better.

By June of 2014, after six months of intensive therapy, her sputum test eventually showed improvement.

‘I’m an Example of What Delayed Diagnosis Can Do’

Today, Debashree has completely recovered, but those taxing three years still have an impact on her life, and on that of her family. Caring for a daughter with TB, particularly paying for the cochlear implant that would correct her hearing loss, put a huge strain on the middle-class family.

Debashree says her doctor failed to properly inform her about that side effects, brushing them off as something that can be reversed later – a rather facile way of referring to a surgery that cost Rs 25 lakh.

“My parents have had to give up their whole life savings for just my hearing,” she remarks bitterly.

Debashree’s mother adds, “We have two daughters. We have done everything for their studies, because we didn’t know this thing would happen. Everything was planned properly – after five years, she’ll finish her studies, she’ll do her job for one or two years, and then she’ll get married.”

Things were going according to plan in 2011. Her mother recounts proudly how Debashree graduated amongst the top of her class. “And after that, everything went in the wrong direction.”

But things are finally looking up. Debashree can hear again, and she is able to work full-time now. She is also determined to share her story, so that people are more aware of the realities of the disease.

“I am a big example of what delayed diagnosis can do to a girl’s life,” she says, not with bitterness, but with hopefulness.

(Zarah Udwadia is an independent writer who specialises in Global Health and Visual Studies. A graduate of Duke University, her research and creative work includes writing, research and art projects in the areas of women's health, human rights, art history, and the use of visual arts in health in Mumbai, Mexico City and North Carolina.)

(This story is from the collection titled Nine Lives: Women and Tuberculosis in India by Chapal Mehra and Zarah Udwadia. This has been published under the campaign Survivors Against TB – a community-based movement led by survivors who are working to strengthen India’s fight against TB.)