“I didn’t touch my child for six months. I would see him every day and then he was sent away. How do you ask your child to stay away from you,” asked 32-year-old Sarika, a multi-drug resistant TB Survivor and Charted Accountant from Mumbai.
Twenty-six-year old TB survivor Saher from Delhi said, “When you are woman in the corporate world you can’t show infirmities. You certainly don’t want to be the victim because of TB.”
“My friends used to tell them, ‘No, it’s normal, it could happen to anyone, we have to take precautions.’ Our generation understands. But the mom-and-dad generation still has a lot of fear, they don’t have awareness,” 22-year-old Mansi who is an artist said. She is a survivor of extreme drug resistant (XDR) TB.
Nur, 29, is a young mother from Bengal’s Katwa is a survivor of multi-drug resistant TB.
She said, “I thought six months of treatment would mean end of TB. Nobody tells you it can happen again and again.”
Durgawati, 32, who is a multi-drug resistant TB Survivor from Delhi said, “I was tired of taking medicines in the private sector. It was so expensive and there was no improvement. Everyone would give us a different diagnosis and would put me on new medication.”
“When I first wanted to speak about my Tuberculosis, many people advised me otherwise. They said, ‘It’s in your past, why do you have to tell anyone, you are healthy now and that’s what matters,” said Deepti Chavan, 34, survivor of multi-drug resistant tuberculosis from Mumbai.
“I thank God that I never went for the government programme. The only time I went there to take medication, I was made to stand outside in the sun because I had extensive drug resistant (XDR) TB,” recalled 26-year old Tejal from Vadodara who survived extensive drug resistant TB.
“The health worker spoke rudely to me implying that I had brought XDR-TB on myself by not adhering to the medication,” she said.
“TB was just a medical term that we had heard. We knew no one who had survived TB or maybe no one spoke about it. TB in the intestine was often misdiagnosed,” said Nandita Venkatesan, 26, who is an Extra Pulmonary TB Survivor and works as an online journalist in Mumbai.
Debashree, 29, from Pune, an XDR-TB survivor said that she just craved for some human interaction. She explained, “For five years I’ve been at home. I used to take my sister with me when I used to meet my friends, and ask her to sign to me what they are saying so that I can understand at least that much. It’s just those small five minutes of human interaction that you need.”
This photo-feature is contributed by Survivors Against TB – a community-based movement led by a group of TB survivors who are working to strengthen India’s fight against TB.
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