Eight months into her marriage, Rose Joseph (21, name changed) was diagnosed with tuberculosis (TB) in January. Joseph was hospitalised for a week but when she was discharged, her husband asked her to stay at her parents’ place in Malad, saying he and his family had to travel for a wedding.
For two weeks, her husband did not call to check on her. When her mother took her to her husband’s home, her mother-in-law said they didn’t want her in the house because she had TB.
“My husband wasn’t even ready to face me. My mattress, bedsheets and other belongings had been burned,” said Joseph.
Six months on, Joseph has completed her course of TB treatment and was given the ‘all-clear’ by her doctor last week. “I don’t know if my husband and his family will ever take me back,” she said.
Joseph is one of the many TB patients in the city who suffer due to the social stigma attached to TB, in spite of it being a curable disease. A study conducted by Laxmi Lingam and Neha Madhiwala for the Tata Institute of Social Sciences (TISS) in 2009 found a gender dimension to the stigma with men and women patients facing unique sets of problems.
For women, a TB diagnosis could trigger violence, according to Padma Deosthali of the Centre for Enquiry into Health and Allied Themes (CEHAT).
“Our Dilaasa crisis centres see many women facing domestic violence and being driven out of the house after being diagnosed with TB or HIV,” she said.
Male TB patients are often cared for by their wives and families, but a woman patient isn’t always offered care.
“Families of adolescent girls diagnosed with TB often deny them treatment because they want to keep the disease under wraps,” said Madhiwala, coordinator, Centre for Studies in Ethics and Rights (CSER).
“Family counselling helps bring an attitudinal change to the way TB is perceived in 20 per cent of our cases,” said Prabha Mahesh, director, TB unit, Alert India.
She added that their TB centres’ health workers are instructed to deal with patients without a visible bias.
“Conveying an easy body language and talking properly with the patients is important. When families see us treating patients normally, they are more likely to let go of the bias in their minds.”
“For many in India, TB is not a new disease. The stigma stems from knowing about the condition and its infectious nature,” said Madhiwala.