Patiala: On January 25, Ram Chand sat on a chair outside his house in the narrow lane of Patial’s Gian Colony, basking in the winter sun. The 65-year-old, wearing a red beanie and his face covered with a mask, had spent months in a small room by himself after being diagnosed with tuberculosis.
Though it has been almost a month since he has tested negative for the disease, the nebuliser still lies in a dark corner of his room and medicines are loosely arranged on a small shelf.
The government claims that treatment for tuberculosis is free in the country. But Chand, who used to work as a daily labourer earning a meagre says he has to spend almost Rs 20,000 to purchase additional medicines from private shops.
Fixed-dose combination or FDC medicines – a single dosage form that contains two or more active ingredients – are available for free at government hospitals. Ram Chand received free TB medication from a government hospital for nine months.
But Ram did not avail himself of the Jan Aushadhi scheme. He also wanted to avoid the long queues and limited facilities at government hospitals, and thus made multiple visits to private psychiatrists for therapy. Each session cost him Rs 1,500, along with an additional Rs 1,000 for medicines.
Ram was first diagnosed with TB three years ago. He took medication as advised by doctors for months and the disease went away. But a year ago he was re-diagnosed and underwent treatment at a TB hospital in Patiala for 10 days.
When he returned home , his family gave him a separate room, even though there were only three rooms for his family of 14. Ram has three sons and three daughters in law, and six children.
Ram sits on a chair, basking in the sunlight after recovering from TB, as recommended by his doctor. Photo: Suhail Bhat/The Wire.
He was given separate plates and glasses for his meals. While these were precautions he could understand, he only felt more lonely as a result.
For nine months, he took medicines given to him by the hospital.
For those months, he was unable to work, making him feel like a burden on his family. His financial condition worsened significantly during this time, pushing him into depression.
The worst came when his wife, who was ill, passed away three months ago. “I couldn’t be with her during her final days…We would talk to each other through this small window,” Chand said.
“I feel guilty that I couldn’t sit beside my wife, hold her hand and tell her that I am there. I felt so helpless. I would cry in loneliness,” he said. “It only deepened my depression.”
Pulmonary tuberculosis (PTB) is a bacterial infection that primarily affects the lungs. Patients should be treated in hospitals for six months to prevent the spread of the disease to others. “Many patients stop taking their medication once symptoms disappear, usually after 4-5 weeks, but the full course of at least six months is essential for recovery,” says Dr Parmod Singla from Singla Chest TB and Asthma Clinic in Bathinda, Punjab.
“In my 25 years of experience, I have observed that men are often the first to be affected as they are more exposed to external environments,” he explains. “Most of my patients come from below the poverty line, and they are the most vulnerable to this disease.”
Ram Chand sits on a charpai in his small room, where he has spent nine months alone during his TB treatment. Photo: Suhail Bhat/The Wire.
Support
TB affects over 10 million people worldwide annually and claims 1.5 million lives each year. Studies estimate that between 40% and 70% of TB patients experience clinical anxiety or depression during treatment; many patients lose their jobs, struggle to support their families, and withdraw from their communities out of fear of rejection.
The lack of psychological support in TB care often leads to poor treatment adherence, worsening health outcomes.
Studies also reveal that 60% of patients do not reveal their diagnosis to friends and neighbours. Also, stigma is more common among middle class and female patients. This feeling of discrimination hampers personal, sexual, social and professional aspects of a patient’s life.
Dr. Sakshi Gupta, a psychiatrist with 12 years of experience and the founder of The Healing Clinic in Patiala, has received several TB patients referred by family members or physicians. “However, there is a lack of awareness among patients, leading to severe consequences like increased risks of substance abuse, and in some cases, suicidal thoughts.”
She says that TB is often viewed as a purely physical ailment, but its psychological toll can be devastating. “Stigma, social isolation, and discrimination make the recovery process even more difficult, especially for women who are frequently blamed as the source of the disease. In extreme cases, they face rejection from their own families and even divorce.”
Aarti shows her X-ray, taken at the Government TB hospital in Patiala. She is scared to get closer to her kids to
prevent spreading the disease. Photo: Suhail Bhat/The Wire.
Women
In many cases, patients with TB have no choice but to continue working due to their financial situations.
Aarti, 26, from Patiala was diagnosed with TB in November last year. It started with a dry cough. The mother of three children thought it was a viral infection.
For two weeks she took a cough syrup and other medicines but there was no improvement. With help from a local ASHA worker, she visited a hospital where she was diagnosed with TB.
She was told that all her treatment costs would be covered by the government and that she has to isolate herself from the rest of the family. “Who would feed my children?” she asked herself.
Aarti has been living with her in-laws since she got married at 16. Her husband passed away in 2021. She does agricultural labour work in the fields to support her in-laws and children, earning around Rs 250 per day. Despite her illness, she had to work to ensure her family had something eat.
Also read: India Is Going to Miss the TB Elimination Deadline Set by the Modi Government
“I wish I could rest, but there’s no one to help,”she said. She has been on medication for three months and is often too weak to work.
There are other worries too. “I used to breastfeed my younger child, but now I worry about spreading the virus to him,” Aarti said.
“My children don’t understand. They still want the same care and closeness from me. There’s no one to look after them. I feel like I’m carrying a heavy burden. Every time I cough, I worry I might spread it to my kids,” she added.
Aarti struggled with anxiety and eventually fell into depression but did not know where to turn for help. She felt uncomfortable discussing her mental health with anyone.
Although ASHA workers play a crucial role in supporting TB patients by providing regular follow-ups, ensuring medication adherence, and offering basic healthcare guidance, Aarti said she would feel “strange talking about her mental health with them.”
As per the latest study in India, the overall prevalence of common mental disorders (CMDs), encompassing depressive and anxiety disorders, was 5.1% in the 2016 National Mental Health Survey, with a treatment gap of 80.4%. The treatment gap refers to the percentage of people – with mental health disorders in this case – who need treatment but do not receive it. In India, this gap is 80.4%, meaning most individuals struggling with mental health issues lack access to proper care due to stigma, limited mental health professionals, and high costs.
Persons with mental health issues face many challenges while reaching out to mental health services. These challenges are compounded among people from marginalised populations or hard-to-reach areas, leading to inconsistent usage of these services.
Dr. Gupta stressed on the importance of training ASHA workers in this regard as they are the first point of contact for patients including those suffering from TB. Door-to-door support would improve things, she added.
There’s a significant gap in mental health services, particularly in rural areas, she said, adding that many patients and their families don’t understand the mental health challenges associated with TB. “This disconnect creates a barrier between them and the government’s healthcare initiatives,” Gupta, who has worked extensively in rural communities, added.
Gupta emphasised that TB patients from marginalised communities require immediate mental health support, yet very few mental health professionals operate in rural areas. “In cities, we at least have the option of therapy and counselling services. But in villages, even acknowledging mental health as a real concern is a challenge,” she added.
The disease affects the young, too.
Seventeen-year-old Archana’s life was drastically changed by both TB and its mental health toll.
“I never thought something like this would happen to me,” said Archana. “I was just a regular student, living my life. Suddenly, everything changed.”
Archana, a class 12 student at Government Girls School in Patiala, had been struggling with a persistent cough for a month. She initially took cough medicines, but when nothing worked, her family decided to take her to the TB hospital for tests. After a day, her uncle went to pick up the reports and found out that she was TB positive.
“I didn’t go to school for a few months, and my studies were impacted. Now I’m trying to catch up on the lessons I missed. I didn’t visit any relatives, and I didn’t tell my school friends about what I was going through,” said Archana.
This report was supported by The National TB and Mental Health Media Fellowship by Survivors Against TB. This is one of three reports on the topic.