When the disease ends, the stigma doesn't

Raipur | Ayushi Sharma: On the afternoon of November 29, 2025, Roshan Sarkar was attending to customers at the private bank where he worked in Bhilai, Chhattisgarh, when he suddenly coughed up blood.

The incident lasted only a few seconds. But inside the branch, it was enough to change everything. A colleague noticed the blood first. Within minutes, whispers spread across the office. People assumed that Roshan's tuberculosis had returned. Some stopped speaking to him. Others refused to share lunch with him. A few quietly began avoiding him altogether.

Nobody asked whether he had already recovered. Nobody asked what the doctors had told him.

The sight of blood was enough for people to conclude that he was infectious. Doctors say coughing up blood does not necessarily indicate active tuberculosis or that a patient is capable of transmitting the disease. Tuberculosis can leave permanent scars and damaged blood vessels inside the lungs that may bleed occasionally, even years after treatment has ended. The condition, known as hemoptysis, is a recognized complication among some TB survivors. In rare cases, certain anti-tuberculosis medicines can also lead to bleeding-related complications.

Roshan explained this repeatedly.

He had completed treatment for drug-resistant tuberculosis (DR-TB) years earlier. The bleeding was not caused by an active infection but was linked to the long-term effects of the disease and the intensive medication he had undergone during treatment. Nobody believed him.

For nearly ten days, the atmosphere inside the bank remained unchanged. Colleagues continued to keep their distance. The isolation gradually became unbearable. Finally, the branch manager called him into his office and advised him to resign and focus on treatment, although Roshan had already completed his medication years ago.

For many people, tuberculosis ends when treatment ends. For Roshan Sarkar, it did not.

"I had no one to talk to," he recalled.

His experience reflects a reality that thousands of tuberculosis survivors continue to face across India. While the country has made significant progress in diagnosing and treating TB, the stigma associated with the disease often survives long after the bacteria have disappeared.

For many patients, tuberculosis becomes far more than a medical condition. It becomes a battle against loneliness.

A disease that took more than health

Roshan was already carrying the weight of personal loss long before the incident at his workplace. His father had died in 2023. More recently, doctors detected a cyst in his mother's breast, which was later diagnosed as breast cancer. As the only earning member of the family, he was suddenly responsible for supporting his household while trying to cope with discrimination at work.

The emotional burden was immense. Yet this was not the first time tuberculosis had left him isolated. During the nine months he spent undergoing treatment for drug-resistant tuberculosis in 2018, he gradually lost contact with most of his friends. One by one, people distanced themselves. The disease had taken an emotional toll long before it affected his professional life.

He still remembers the sleepless nights when he dreaded facing people. "There were days when even hearing a child in the family cough would make me anxious," he said. "I kept wondering whether I had somehow infected someone else."

The fear lingered long after he recovered. That evening, after returning home from work, Roshan kept asking himself the same question. Why was he still being punished for an illness he no longer had?

Even today, he says, he carries a deep sense of disappointment- not only with society's response but also with a healthcare system that took months to identify his disease.

Months of uncertainty

Roshan's illness began in 2018 with what appeared to be an ordinary cough. "Initially, it would come and go," he recalled. "The doctor diagnosed it as a viral infection, prescribed medicines and advised me to rest."

But the cough refused to disappear. Over the following weeks, it became persistent. His body grew weaker. He experienced constant body aches and woke up drenched in sweat almost every night. Like many tuberculosis patients in India, Roshan spent months searching for answers.

"I went from one doctor to another," he said. "For nearly three to four months, there were repeated consultations, misdiagnoses and a trial-and-error approach to treatment."

Even after undergoing a bronchoscopy, there was still no definitive diagnosis. Doctors prescribed multiple courses of antibiotics. Nothing worked. "By the time I was finally diagnosed, I had developed multidrug-resistant tuberculosis."

Multidrug-resistant tuberculosis (MDR-TB) is a form of tuberculosis that does not respond to rifampicin and isoniazid- the two most powerful first-line drugs used to treat TB. Patients diagnosed with MDR-TB require longer, more complex treatment involving multiple medicines that often cause severe side effects.

For many patients, completing treatment itself becomes a challenge. Looking back, Roshan believes his experience was not an isolated case but a reflection of larger systemic gaps.

"Even today," he told CGKhabar, "quality tuberculosis care remains a challenge in Chhattisgarh. Whether it is timely testing, diagnosis or Tuberculosis Preventive Treatment (TPT), these services are still not consistently available."

His story illustrates a challenge that extends far beyond one individual.

The hidden cost of DR-TB

A similar story is that of 23-year-old Pushpa Sahu, who was abandoned by her husband after being diagnosed with drug-resistant tuberculosis (DR-TB) in April 2025.

For nearly three months before her diagnosis, Pushpa suffered from a persistent cough, recurring fever and rapid weight loss. Despite her worsening condition, she did not seek medical help immediately, believing it was just a seasonal illness.

"I could barely get out of bed. I had stopped eating and had become extremely weak," she recalls. When her condition deteriorated and she became bedridden, her mother came to visit and took her to a government health center.

Initial tests confirmed tuberculosis. Further examinations, which took another week, revealed that she had developed DR-TB, a severe form of the disease in which the bacteria become resistant to the most commonly used anti-TB medicines.

The diagnosis changed her life overnight. The disease affected not only her physical health but also her emotional well-being.

"My husband started behaving differently after he learned about my illness. After a few days, he said he could not take care of me anymore," Pushpa says, fighting back tears.

After she was sent back to her maternal home, she says her neighbors also began behaving differently. "They seemed afraid and kept their distance. It felt as if they thought we would ask them for financial help," she says.

The stigma surrounding tuberculosis continues to affect thousands of patients across the country. Even though TB is curable, many patients face discrimination, social isolation, and, in some cases, abandonment by their families. Women often bear the greatest burden, with several studies showing that a TB diagnosis can lead to marital breakdown, rejection by family members, and financial hardship.

"I want to get healthy again and stand on my own feet," says Sahu.

Sitting beside her daughter, her mother adds, "This disease has taken away many things from her, but I still hope she gets a new beginning."

A crisis hidden behind progress

India frequently speaks of eliminating tuberculosis. Government campaigns, official targets and annual progress reports highlight the country's achievements in reducing the burden of the disease. Yet one of the most dangerous forms of tuberculosis- drug-resistant TB- continues to receive far less attention than it deserves.

According to the World Health Organization's Global Tuberculosis Report 2025, more than one in every three people who developed multidrug-resistant or rifampicin-resistant tuberculosis (MDR/RR-TB) in 2024 lived in India. Together, India, China, the Philippines and Russia accounted for more than half of all estimated drug-resistant TB cases worldwide.

Despite this enormous burden, India has also made significant progress in controlling tuberculosis.

The WHO estimates that the country's TB incidence has declined by 21 percent, while treatment coverage has increased from 53 percent to 92 percent. These are substantial public health achievements. Yet they conceal another troubling reality. Every year, nearly one lakh people with tuberculosis in India remain undetected. These are patients who are either never diagnosed or never notified to the national programme, allowing the disease to spread silently within families and communities.

Drug-resistant tuberculosis represents one of the most serious public health challenges facing India today. Unlike drug-sensitive TB, DR-TB does not respond to the standard medicines used to treat the disease. Patients often undergo longer and more complicated treatment involving multiple drugs and severe side effects. Many struggle to complete the regimen, reducing their chances of recovery while increasing the risk of further drug resistance.

The challenge is particularly significant because India accounts for more than 27 percent of the world's drug-resistant TB burden.

Unless patients are diagnosed quickly and started on appropriate treatment, DR-TB will continue to spread silently, threatening the country's ambitious goal of eliminating tuberculosis.

Chhattisgarh's hidden challenge: fewer cases, poorer outcomes

At first glance, Chhattisgarh does not appear to be among India's high-burden states for drug-resistant tuberculosis. In 2024, the state reported 369 DR-TB patients- far fewer than Uttar Pradesh, which recorded 14,993 cases, Maharashtra with 9,226, Rajasthan with 4,112 and neighbouring Madhya Pradesh with 3,361.

On paper, the numbers suggest that Chhattisgarh has a relatively smaller burden of drug-resistant TB. Treatment outcomes, however, tell a different story.

According to Government of India data, 143 patients in Chhattisgarh who were initiated on the shorter oral DR-TB treatment regimen in 2023 successfully completed treatment. During the same period, 26 patients died while undergoing treatment. That means that for every 100 patients who started treatment, nearly 15 lost their lives.

Nationally, the mortality rate among patients receiving treatment for DR-TB is estimated to range between 10 and 13 deaths per 100 patients. Chhattisgarh's mortality rate is therefore noticeably higher than the national average.

Put simply, if 100 patients begin treatment for drug-resistant tuberculosis in India, around 87 to 90 survive. In Chhattisgarh, however, only about 85 survive while nearly 15 die.

The figures point towards a troubling reality. The state's challenge may not lie in the number of drug-resistant TB patients being notified, but in what happens after they enter the treatment programme. While fewer patients are diagnosed with DR-TB compared to many other states, a larger proportion of those who begin treatment are dying. The numbers alone cannot explain why.

But they raise critical questions about whether patients are being diagnosed early enough, whether they remain on uninterrupted treatment and whether they are receiving adequate support throughout their recovery.

Delayed diagnosis fuels Drug Resistance

For physicians working in Chhattisgarh, the reasons behind these outcomes are rooted in geography, poverty and gaps in healthcare access. "Chhattisgarh is predominantly a tribal state, and many tribal communities still lack access to proper healthcare facilities. This often leads to delayed diagnosis and delayed treatment of tuberculosis," Dr. Arun Kedia told CGKhabar.

According to him, malnutrition remains one of the biggest challenges in the state and significantly increases the risk of developing tuberculosis. Delayed diagnosis further worsens treatment outcomes, particularly because many patients stop taking medicines once they begin feeling better, unaware that the treatment must be completed even after symptoms disappear.

Incomplete treatment remains one of the leading reasons for the emergence of drug-resistant tuberculosis.

"Migrant workers are another vulnerable group," Dr. Kedia said. "Many discontinue treatment midway when they recover enough to return to work. They resume medication only after their condition deteriorates. By then, drug resistance may already have developed."

These factors, experts say, are among the major reasons why treatment outcomes remain poor despite the availability of medicines under the National TB Elimination Programme.

Healthcare infrastructure presents another challenge.

"In some places, even medicines are not consistently available, making uninterrupted TB treatment difficult. Several district hospitals also lack adequate equipment for proper detection," Dr. Kedia said.

Even after tuberculosis is diagnosed, identifying whether the infection is drug-resistant is not always straightforward. "Sputum samples require proper transportation and handling. If samples are not transported correctly, the bacteria die before reaching the laboratory, and the test results become inaccurate."

The delay often begins much earlier.

Many patients first seek treatment from general practitioners, where persistent cough and fever are treated as viral illnesses or seasonal infections. Temporary relief from medicines often creates the impression that the illness has improved while tuberculosis continues to progress unnoticed.

"This masks the disease and delays diagnosis, allowing the infection to spread further inside the body," Dr. Kedia said.

He advises that anyone experiencing fever or a persistent cough for more than two weeks should consult a specialist instead of relying solely on symptomatic treatment. "By the time many patients reach the appropriate consultation, the disease has already progressed significantly."

The diagnostic gaps continue even at the primary healthcare level.

At many local health centres, the focus remains limited to dispensing medicines. Proper diagnosis requires sputum collection, laboratory testing and timely transportation of samples to higher centres where advanced diagnostic facilities are available. Yet in many areas, this referral system does not function efficiently.

"The biggest gap in the system remains early and accurate detection," Dr. Kedia said.

Public health experts note that poor treatment outcomes are rarely caused by a single factor.

Instead, they result from the combined effects of delayed diagnosis, interruptions in treatment, malnutrition, co-existing illnesses and limited access to healthcare- particularly in remote and tribal regions.

Although the available data does not establish the precise reasons behind Chhattisgarh's relatively high mortality rate, it raises important questions about whether patients are being diagnosed early enough and whether they receive uninterrupted care throughout treatment.

The Challenge of Reaching Patients

For many people living in Chhattisgarh's tribal districts, the battle against tuberculosis begins long before treatment starts. Healthcare facilities in remote regions such as Bastar, Dantewada, Bijapur and Sukma are often located far from villages, while specialist services are available only at higher centres. Patients from interior areas frequently travel for hours- sometimes through forests and difficult terrain, and often across roads that remain poorly connected- to reach a Primary Health Centre (PHC) or Community Health Centre (CHC) for diagnostic tests.

For families already struggling with poverty, every hospital visit comes at a cost. Travelling long distances often means losing an entire day's wages. Repeated visits become financially and practically difficult, forcing many patients to choose between earning a livelihood and continuing treatment.

As a result, treatment is frequently interrupted. For tuberculosis, and especially for drug-resistant tuberculosis, such interruptions can prove fatal. Experts warn that delayed diagnosis and inconsistent treatment allow the disease to progress further, reduce the chances of recovery, and increase the risk of continued transmission within communities.

Poverty, malnutrition and the burden of other illnesses further compound the problem. Consequently, many patients reach healthcare facilities only after the disease has advanced considerably. The challenge, therefore, is not simply to identify more tuberculosis patients.

It is to ensure that people living in remote and tribal areas have timely access to testing, diagnosis, treatment, and follow-up care.

Reducing case numbers alone will not improve outcomes if patients continue to die because they are diagnosed too late or are unable to complete treatment. Seven years after completing treatment, Roshan Sarkar says tuberculosis continues to follow him. The infection may have left his lungs, but the stigma remains.

His story serves as a reminder that for many survivors, recovery is not marked by the last dose of medicine or a negative test report. It continues to be shaped by fear, misinformation, and discrimination- in workplaces where colleagues keep their distance, in friendships that quietly fade away, and in the silent anxiety of being judged for an illness they no longer have.

As India moves towards its goal of eliminating tuberculosis, experts say the country must address more than the disease itself.

Early diagnosis, uninterrupted treatment, stronger healthcare systems, and better access to care are essential to controlling drug-resistant tuberculosis. But equally important is dismantling the stigma that continues to isolate survivors long after they have recovered.

For people like Roshan Sarkar, the battle against tuberculosis did not end when the treatment was over.

It simply changed its form.