The survivors featured in this essay are part of a campaign called Survivors Against TB. This is a community-based movement led by of a group of TB survivors who are working to strengthen India’s fight against the disease. These survivors understand and have experienced surviving TB in its severest forms. Based on these experiences, these survivors advocate with stakeholders for the changes necessary to make TB care more accessible and patient centric in India. The stories have been written by Chapal Mehra.
“I realised that there is a silence around TB, as if it were my fault. I spent my entire college life pretending nothing was wrong with me. My doctor said I would face discrimination if I spoke about it. We can’t fight TB until we end the stigma!”
–Nandita Venkatesan, TB Survivor and Editor, Mumbai.
“Isn’t it worrying that even today we don’t know the exact number of MDR TB cases in this country? Isn’t it scary that most MDR patients are misdiagnosed and treated incorrectly? What is worse is that most Indians cannot access the right diagnostics or drugs. Why are we letting a curable disease become so powerful?”
–Deepti Chavan, MDR TB Survivor and Patient Advocate, Mumbai
“What we need is support, empathy and encouragement for TB patients. It’s not only a physical battle but also a mental one where family and friends matter a great deal.”
–Deepti Chavan, MDR TB Survivor and Patient Advocate, Mumbai
“For a girl, having TB is almost criminal. We can’t talk about it. When people find out they ask you the most insensitive questions. ‘Are you normal? Can you still have children? Who will marry you?’ So many girls approached me saying that they have all been forbidden to talk about TB.”
–Nandita Venkatesan, TB Survivor and Editor, Mumbai.
“TB can consume your life. Until my diagnosis I was an extremely focused person hoping to stand out and achieve my goals. I felt invincible nothing could stop me. With TB I felt everything was slipping away.”
–Saurabh Rane, 25, MDR TB Survivor and Fitness Enthusiast, Mumbai
“Anyone can get TB. It’s not the patient or their family that is to blame. You have to free the patient from the stigma!”
–Deepti Chavan, MDR TB Survivor and Patient Advocate, Mumbai
“I ran the Half Marathon because I wanted to prove that there is more to my life than TB. I ran as if nothing mattered. All the pain had vanished when I reached the finish line. I was still on treatment. I finally knew I had defeated TB- in every way!”
–Saurabh Rane, 25, MDR TB Survivor and Fitness Enthusiast, Mumbai
“It’s harder for a woman to survive TB. When we get sick it’s our fault or the fault of our mothers. I wasn’t one of those people who accepted this silently. I never lived my life by the rules that the society set. So I wasn’t going to let TB stop me especially when life had so much to offer!”
–Nandita Venkatesan, TB Survivor and Editor, Mumbai.
“Fight TB, not the patient. The patient needs your support and the right diagnosis and treatment. Lets end TB in India!”
–Saurabh Rane, 25, MDR TB Survivor and Fitness Enthusiast