Many patients do not reveal that they have the disease to their family.
On her train commute to work in Mumbai, Nandita Venkatesan logs on to Facebook to check the many messages she receives every day from young tuberculosis (TB) patients. She reads each message carefully: a girl wondering whether to tell her boyfriend that she has TB, another worrying if missing periods is a side effect of TB medicines, and a 20-year-old’s query if TB will affect her sexual life.
Venkatesan, who lost her hair and hearing to two bouts of intestinal tuberculosis and hid her illness for eight years of her decade-long suffering, is now a TB champion. She knows only too well why it is important to answer each question. “People don’t ask doctors these questions. Nobody explains side effects. I had no one to refer to when I had similar doubts and read up a lot then. That is how I answer questions,” said the 28-year-old Venkatesan.
“The disease is seen as a matter of shame and defeat. And self-stigma among girls is particularly high,” said Venkatesan, days before she won an award from a major Indian bank for her ‘brave fight’ against TB.
India is the world’s TB hotspot, accounting for nearly a quarter of the global cases. Abdominal TB is not as commonly seen as pulmonary TB — the bacterial lung disease that spreads through coughs and sneezes — but patients of both suffer the same social stigma linked to the disease.
Venkatesan, who was diagnosed with tuberculosis when she was 17, “in the most decisive years when you have notions of beauty, when girls my age were dating and building careers”, said women suffer more than men as they are more hesitant with queries. “A woman wrote to me that her husband divorced her after she was diagnosed with tuberculosis,” said Venkatesan, who was advised by her doctor to not disclose her illness to “avoid repercussions on her personal life”.
Manju Bajiya of Operation Asha, a non-profit that works with TB patients, said that people suffering from the disease rarely speak openly about it. “Many patients, particularly women, don’t even tell their families they are suffering from TB, as they fear being thrown out,” said Bajiya. Venkatesan had supportive parents, yet battled depression and “felt like a waste”. Cured two years ago, the media studies graduate sat for a job interview with a major business newspaper where she verbally answered questions typed out for her.
“I have a job. I am a financially independent girl. Patients and survivors who write to me look up to me for that. It was a lonely battle for me. But you need that hope — that if she can do it, so can we.”