"When I first wanted to speak about TB, people advised me otherwise. But I think for me it was those six years of treatment that had to be communicated."

Deepti Chavan Patient Advocate, MDR-TB Survivor

When I first wanted to speak about TB, people advised me otherwise. But I think for me it was those six years of treatment that had to be communicated. My battle against TB started seventeen years ago, when I was a sixteen-year-old student preparing for my board exams. An X-ray confirmed that a persistent cough was actually TB, though doctors failed to diagnose me with MDR- TB till many months later.

Delayed diagnosis was the starting point of my agony and I was not prepared for the side-effects of the medicines used to treat MDR-TB. There’s one drug, cycloserine, it makes you suicidal, it makes you irritable, and you just lose your mind. The family feels that the patient is doing this because he/she is not well and is frustrated, but the thing is, he’s doing it because he’s on that medicine. This is just about one of the drugs. There’s another drug called clofazimine, which makes your complexion dark. I was afraid to look into a mirror because of the drastic change in my appearance.

My parents were subject to relentless questions from people. In 2000, after my first surgery, they were repeatedly asked about how I would get married. I wondered at their behavior. Now that I am out of surgery, shouldn’t people be happy that I am well, rather than worry about my being marriageable?

My family was a huge support, fighting for me. I was lucky that no one else got infected at that time, but now I have that fear.

I completed my treatment in 2005. In 2011, I married Neeraj, who I first became friends with in 2004. When Neeraj told me he wanted to get married, my initial response was to say no because of TB. But Neeraj was unconcerned, and ultimately his parents were supportive too.

After my TV appearance on Satyamev Jayate, many patients began to ask me for advice. The side effects of MDR treatment can be grueling, and few patients are properly informed about this. Now, I am able to provide the counseling that I missed out on. Other patients tell me that they have to hide the fact that they are taking the treatment, they’ll take all the medicines at night when everyone else is sleeping, the husband wants divorce, they are thrown out of their houses, they are kept away from their children. I was fortunate that nothing of that sort happened. Right now I am focusing on being a patient advocate, because I don’t think I can do anything besides TB.

I can’t treat patients, but I can support them in other ways.