Nandita Venkatesan

Journalist | Age 26 | Survivor Extra-Pulmonary TB (EPTB)

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My Story

In India, or anywhere in the world, it is harder for a woman to survive TB. When we get sick it’s our fault or the fault of our mothers. I was never one of those people who accepted this silently. I never lived my life by the rules society set. So I wasn’t going to let TB stop me especially when life had so much to offer!

It is true that TB changed my  life. I was 18, had excitedly just begun college when I started getting severe abdominal pain, accompanied by extreme nausea and a mysterious loss in appetite. 

The initial diagnosis was a viral infection because of the Mumbai rains. Though, the rain ended, my sickness didn’t. Every evening I would get very high fever and would constantly feel exhausted. I was barely eating anything.


In India, or anywhere in the world, it is harder for a woman to survive TB."

Despite a battery of tests, diagnosis became a challenge until I changed to a new doctor. In fact I was the first to suggest intestinal TB. No one else even suspected it.

A CT scan confirmed my family’s worst fears. 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. And that too in the intestines? My family’s surprise mirrors what most TB affected families encounter when diagnosed with TB- horror and surprise at how little anyone in India talks about it. I later learnt that even most doctors miss diagnosing extra pulmonary TB.

The diagnosis came right in the middle of my first year exams and taking those exams with the pain and fever was terrible. The medicines began soon after. Even though I was determined to fight TB no one had counselled me on what to expect. I was just 17 and the side affects were terrible. I had severe nausea, mood swings, constant sense of weakness and had to take leave from college. 


A CT scan confirmed my family’s worst fears. 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."

I was consuming close to 15 tablets a day. I had never felt lower in life. There was also terrible weight loss. The issue, as with most TB affected women was deeper. My doctors had told me not to mention TB to anyone. 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. This inability to talk about TB added to my frustration. Not surprisingly I was diagnosed with depression.

My depression led to lack of confidence. I avoided going out with college friends. They too were perplexed by my behaviour and took to taunting me about my social problems. “ She really needs to grow up”  they would say to my face. No one knew there was always a nagging feeling that you have, to reach home on time so that you could eat those 15 tablets.  

In 2009, I was finally declared TB free and her medicines were stopped.

I was given an assurance that TB would never return. It took me sometime to get over TB. I decided to move to Delhi-a new city to start afresh. 


My doctors had told me not to mention TB to anyone. 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."

Life finally seemed back on track. I had a new career and new friends and was focussed on making the best out of it. In 2012, I moved back to Mumbai because I wanted to study finance and build a career in financial journalism.

In 2013, I started getting a familiar pain in my lower abdomen again. I went back to my doctor who gave me viral medicines hoping that it wasn’t anything serious but the pain only got worse.

I still remember the day my doctor told me that it might a re-infection of my intestinal TB. I was gripping my mother’s hand under the table. I could not believe TB could return. Every single painful memory came flooding back. I felt defeated and lost. My doctor told me  she didn’t know anyone who had a re-infection. But the words don’t mean anything. I was left wondering, why me? 

This time TB was far more severe. The medicines did not make the pain subside. I was eventually asked to get a surgery. I dreaded hospitals but here I was being wheeled into an operation theatre on my father’s birthday. Those 10 days after surgery, I hoped I would resume a normal life. You survive every trauma hoping that it has an end.


I was gripping my mother’s hand under the table. I could not believe TB could return. Every single painful memory came flooding back. I felt defeated and lost."

This, however, was not the case. After surgery, I, developed an internal fever of about 105 degrees. While getting my CT scan I turned breathless and collapsed. My intestines had gotten entangled causing a near fatal blockage.

I was in the hospital close to 2 months had 3 life-saving surgeries followed by 2 more later. I was admitted in the ICU for almost 10 days. It was traumatizing and terrifying and very lonely. It was the longest I had been away from parents, family and friends.

It was a cruel game. I remember lying in bed thinking that there was so much more that I would want to do and perhaps would never be able to do. You see mortality and you think that if I survive I won’t look back.

But, then somewhere from within me came the resolve- to fight back. I began researching on TB, asked my doctor lots of questions. Good doctors love proactive patients. My doctor shared everything with me I wanted to know. It made me feel more secure.


I was in the hospital close to 2 months had 3 life-saving surgeries followed by 2 more later. I was admitted in the ICU for almost 10 days. It was traumatizing and terrifying and very lonely."

But for the challenges were far from over. I celebrated my birthday on 24th November and two days later I lost my hearing. It was a side effect of the medicine that I was on. I am a communications professional and I can’t hear others. 

With time, I got better and I turned to dance as a way of healing. It helped me channel my  frustration into something creative and I have since given several performances.

Society punishes a sick woman in every way that it can. Some said that my moving to Delhi gave me the re-infection. Would you ever say this to a guy who made it to IIT Delhi –that his move gave him TB? The reason you can make this comment is because I am a girl. You will never ask a guy about who will marry him? Or, whether he is normal?

While I may have fought TB bravely I know it’s difficult for other women. For a girl, having TB is almost criminal. We can’t talk about. 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 and they have all been forbidden to talk about TB. 


Society punishes a sick woman in every way that it can. Some said that my moving to Delhi gave me the re-infection. Would you ever say this to a guy who made it to IIT Delhi –that his move gave him TB?"

Surviving TB came at huge cost. The hospital bills forced my family into debt and we had to sell our home to move to a smaller rented apartment in a suburb further away. My father’s retirement savings and my own savings were consumed by my treatment. I  never went to seek treatment with the government. I didn’t know about RNTCP. If I had known I would have tried to go there. Why isn’t there enough awareness? Why does the private sector charge so much for this disease?

I am a single independent woman and I can tell you the problems women face are quite different. We suffer far greater stigma. Today, we need programs –that are specifically targeted at women. We need counselling for female patients and their families. We need to break this silence around TB in India, especially for women.

It’s going to be hard to find a companion who would be understanding and supportive in a society such as thisIts not my fault I got TB but it is to my credit I defeated it and built a new life. You can’t end TB for women until you break the silence around it. Battling TB is not a tale of shame and disgust. Be proud that you defeated this dreadful disease.


Today, we need programs –that are specifically targeted at women. We need counselling for female patients and their families. We need to break this silence around TB in India, especially for women."

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