Life after TB shouldn’t be about only surviving but thriving, says theatre actor

MUMBAI When you realise that you are infected with a deadly pathogenic bacteria -- one that infects over nine in a lakh Indians – you go through the predictable stages of shock, anger, rejection, grief and hopefully acceptance.

When theatre actor Akshata Acharya was diagnosed with multi-drug resistant TB (MDR-TB) she decided not to blame it on destiny, but catch the bull by the horns. She not only doggedly pursued treatment to cure herself but worked on her psychosocial scars as well. She has expressed her journey in ‘Eclipsed’, which will be released on February 3.

Diagnosed with TB in 2021 when India was the ‘TB capital of the world,’ Acharya didn’t know the full import of MDR-TB. “Nobody would speak about it. This compelled me to begin a dialogue around this misunderstood disease. I wanted to share my experiences and own them. Hence the book,” said Acharya.

The ailment turned her personal and professional life upside down as she faced ostracism and boorish notions of the disease and infection, she remembered.

When diagnosed with resistance to rifampicin in June 2021, she was put on a short regimen of 9-11 months. “I popped 22 tablets (around 6000 mg) daily,” she said. “It led to vomiting, nausea, boils, rashes and a perpetual state of weakness. My wrecked joints left me immobile.” 600 tablets later she was put on a 24-month regimen. “Though it seemed like the worst was over, it wasn’t. My bone marrow was affected and haemoglobin levels dropped. I got severe peripheral neuropathy (nerves in the feet damaged due to drug toxicity),” she recalled. She would scream in pain each time she tried to walk. “Confined to a wheelchair, the antidepressants made me sleep for hours. Finally, on May 24, 2023, my doctors stopped all medication. Though I still struggle with neuropathy, I’m getting better.”

An equally crucial challenge was facing ignorance from her extended family. People would visit her home sometimes and leave only to tell her and those living in the vicinity that the infection would spread. They carried the tale around, completing her social ostracization. “Once a medical officer who came for inspection told me to avoid telling anyone I have TB. I still wonder why,” she recalled.

MDR-TB changed her life – “my appearance, and my self-confidence were redefined”. While she felt broken and insignificant, in that bleak time she decided to introspect on her strengths. “I learnt to look at myself anew,” she said. “Dare I say MDR-TB was a blessing in disguise?”

Writing ‘Eclipsed’ was therapeutic, and “this book attempts to document my learning and struggles, and bids farewell to a phase of my life that’s taught me so much”. The residual psychosocial scars will go with time, she hopes. “It’s a process. Like Jennifer Lawrence says, healing is never linear. Every day seems like a step towards perfection. I like the space I’m in right now.”

She recalled other patients’ struggles were tougher than hers. “I’ve heard of marriages ending because of TB. At a time when an individual is feeling broken, he or she doesn’t need scorn or pity. Support is enough.”

A side-effect of Acharya’s treatment was skin discoloration. “Rang maza badalala pann mala khoop lokanche khare rang disley (My colour changed but I was able to see the true colours of many).” She emphasised. “TB and mental health go hand-in-hand – a matter ignored even by medics.”

While she still smarts from the pain of betrayal by near ones, her message for all those battling the disease is: “Life after TB shouldn’t just be about surviving, but thriving.”