"A student at Sir J. J. School of Art in Mumbai and a freelance commercial photographer, I was diagnosed in 2013, at the age of 19, when I began coughing and losing weight."

Manasi Khade Photographer, XDR TB Survivor

A student at Sir J. J. School of Art in Mumbai and a freelance commercial photographer, I was diagnosed in 2013, at the age of 19, when I began coughing and losing weight. Tests at the Hinduja Hospital in Mumbai diagnosed me with extensively drug resistant (XDR-TB). I wasted no time in seeking the right treatment. Besides one drug that resulted in vomiting, I was fortunate enough to not have any serious side effects. I was also put on Bedaquiline, a new drug for treating cases of extreme resistance for 6 months.

After a successful surgery to remove a portion of my lungs, and six months of the right combination of drugs, I started gaining weight again and began to return to my normal lifestyle. The biggest challenge of the treatment was a financial one. My family had to sell one of the rooms in their houses to fund the surgery. This was not my family’s first encounter with the dreaded disease.

My father, grandfather and uncles have also had TB in the past, and all have recovered. I do not speak of this history with bitterness, but with certain optimism. My experiences helped me know what to expect and how to deal with the disease, and also ensured that I was well supported. My brother often put his job on hold so that he could be there for me in the year I spent at home recovering. My close friends visited me frequently, even accompanied me to doctor’s appointments.

I witnessed people’s lack of awareness about TB and how damaging it can be. While my friends behaved completely normally with me, their parents would warn them to stay away from me. My friends used to tell them, ‘No, it’s normal, it could happen to anyone, we have to take precautions. Our generation, they understand. But that generation, they all still have a lot of fear, they don’t have awareness.” Besides close family and friends, I was advised against telling anyone else about her TB. No one in my extended family, not my neighbours, nor the people in my college, knew about my hardships.

I would have preferred telling people so that everyone could be careful. I was the patient, but the way I saw it, I wasn’t the only one struggling. My whole family went through it. I was constantly cautious of overburdening my family and underplayed my own struggles. I would talk about my illness in a light and humorous way. “TB hua yaar, bored ho gaya ek saal,” I would say to my friends. I used to take it as a joke, so that everyone wouldn’t get too much tension.”

In August 2016, I started going back to college and doing freelance photography assignments. My life returned to normal- for the most part. A sense of fear still remains. Even though I’ve recovered, there is a feeling that it will come again.