Deepti Chavan

Patient Advocate | Age 34 | Multi-drug Resistant TB (MDR-TB) Survivor

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My Story

When I first wanted to speak [about my TB], many people advised me otherwise. They said, ‘It’s in your past, why do you have to tell anyone, you are well now and that’s what matters’.

But I think for me it was those six years of treatment and two surgeries that make a very powerful story.

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.


My battle against TB started seventeen years ago, when I was a sixteen-year-old student preparing for my board exams."

While, delayed diagnosis was the starting point of my agony, but what I was not prepared for were 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 is not well and he’s 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. It’s a dye basically. I was afraid to look into a mirror. All your life you look a certain way, and you’re used to that, so the drastic change in appearance, did affect me.

 


I was afraid to look into a mirror. All your life you look a certain way, and you’re used to that, so the drastic change in appearance, did affect me."

While I battled these side-effects, my parents were subject to relentless questions from people. In 2000, after my first surgery on my  left lung, a common question my  parents would get from people was, “Now that she has undergone this surgery, who will marry her?” And 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 who will marry me ten years from now?  

Though my  family was a huge support, fighting for me despite doctors telling them to not waste their money and time, I often didn’t want to tell them about my fears. This was simply. because they were suffering too. If I’m suffering from anything which is not contagious, I can take it. I was lucky that no one else got infected at that time, but now I have that fear.


A common question my parents would get from people was, “Now that she has undergone this surgery, who will marry her?”

I completed my treatment in 2005. In 2011, I married Neeraj, who I first became friends with in 2004, after meeting on an Internet chat site which provided a comfortable setting for me to open up about my  story. 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.

I first took on a public role as a patient advocate in 2014, with a radio interview. After that, I was featured on Satyamev Jayate, a popular television talk show by Bollywood actor Aamir Khan. I now speak regularly as a patient representative at a number of government events.


When Neeraj told me he wanted to get married, my initial response was to say no because of TB."

I feel that there are lessons that everyone should learn from my story. Doctors because they misdiagnose, patients how they can cope up, everyone.

After my TV appearance, 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. The culture of silence that shrouds TB becomes more evident with every story I share.


I feel that there are lessons that everyone should learn from my story."

They [other patients] tell me that they can’t tell their in-laws that they have TB. 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. Just because they have TB.

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.


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

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