Life came to a sudden halt for Fahad Zuberi when he was diagnosed with pulmonary tuberculosis in 2015. When his employer found out about the diagnosis, he fired him. It was Zuberi’s first job, in an architecture company in New Delhi, and he was the sole earner in his family, supplementing his father’s meagre pension. “During treatment, my relatives did not want to meet me because of the stigma. I had lost my job. The only respite came from a Facebook support group based in South Africa,” Zuberi said.
Siddharth Bansal developed intestinal TB in 2017. He has been cured but he is still dealing with post-traumatic stress disorder (PTSD) because of the side effects of the treatment.
Dr Satish Ramaiah, director at Maarga hospital, a super speciality psychiatric hospital in Bengaluru, told Frontline that in India, the focus is entirely on medication and not on the mental health havoc that TB causes in patients. According to him, issues ranging from social stigma, actual physiological changes because of the medication, and decreased immunity all contribute hugely to the patient’s mental health.
“It is common for TB patients to experience anxiety, depression and sleep issues during treatment. The poor mental health affects the patient’s response to the medication,” he added.
Zuberi recalled how painful the treatment was and how it had induced depression. “The medicines make you weak and kill your appetite. It makes you puke. The mental health aspects of all this are often overlooked,” he said.
“In India,” said Dr Ramaiah, “tuberculosis is often equated with immuno-compromised conditions like HIV and there is significant stigma around it. This may lead to increased chances of negative thoughts, which in turn may slow the treatment down. A mental health professional should be involved from the very beginning while treating TB.”
Unlike for cancer, there are not enough support groups for tuberculosis patients in the country, although some individuals have dedicated their lives to creating awareness around the disease and offering support. One such individual is Chapal Mehra, who runs the online forum Survivors Against Tuberculosis (SATB) and hosts programmes such as “TB pe charcha” (Discussion on TB).
Mehra believes that online forums like SATB are extremely important as they allow any person to access relevant information, advice, or support without revealing their identity. “This is especially impactful when this is led by TB survivors who help those through their lived experiences. Everything from tuberculosis diagnosis, treatment and stigma is important to talk about,” he said.
Years after Bansal was declared tuberculosis-free, he still deals with the mental health impact. “Over the years, constant emotional turmoil has followed. It was because of therapy that I was able to process it,” he said. Zuberi, who has since gone on to become an independent architect, said: “During treatment, a little support goes a long way in ensuring that patients don’t abandon the process because of the side effects.”