The right support continues to elude TB patients in India.
Life came to a sudden stop for Fahad Zuberi when he was diagnosed with pulmonary tuberculosis in 2015. When his employer found out about the diagnosis, he was fired. It was Zuberi’s first job, at an architecture firm in New Delhi, and he was the sole breadwinner for his family, supplementing his father’s meager pension. “During the treatment, my relatives did not want to see me because of the stigma. I had lost my job. The only respite came from a South Africa-based Facebook support group,” Zuberi said.
Siddharth Bansal developed intestinal tuberculosis in 2017. He has been cured, but still suffers from post-traumatic stress disorder (PTSD) due to the side effects of treatment.
Dr. Satish Ramaiah, director of Maarga hospital, a super-specialty psychiatric hospital in Bangalore, said front line that in India, the focus is entirely on medication and not on the mental health havoc that TB wreaks on patients. According to him, issues ranging from social stigma, actual physiological changes due to medication, and decreased immunity greatly contribute to a patient’s mental health.
“It is common for TB patients to experience anxiety, depression and sleep problems during treatment. Poor mental health affects the patient’s response to medication,” she added.
Zuberi recalled how painful the treatment was and how it had induced depression. “Medications weaken you and take away your appetite. It makes you vomit. The mental health aspects of all of this are often overlooked,” she said.
“In India,” said Dr. Ramaiah, “TB is often equated with immunocompromising conditions like HIV and there is significant stigma around it. This can lead to a higher chance of having negative thoughts, which in turn can slow down treatment. A mental health professional must be involved from the beginning in the treatment of TB”.
support issues
Unlike cancer, there aren’t enough support groups for TB patients in the country, although some people have dedicated their lives to raising awareness about the disease and offering support. One such person is Chapal Mehra, who runs the Survivors Against Tuberculosis (SATB) online forum and hosts shows like “TB pe charcha” (TB Discussion).
Mehra believes that online forums like SATB are extremely important as they allow anyone to access relevant information, advice or support without revealing their identity. “This is especially powerful when it is led by TB survivors who help those through their lived experiences. It’s important to talk about everything from TB diagnosis, treatment and stigma,” she said.
Years after Bansal was declared tuberculosis-free, he is still dealing with the impact on his mental health. “Over the years, a constant emotional turmoil has followed. It was thanks to the therapy that I was able to process it,” he said. Zuberi, who has since become a freelance architect, said: “During treatment, a little support goes a long way to ensure that patients don’t give up on the process because of side effects.”
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