By: Ms Debshree Lokhande
Six years ago, when I walked into a small sleepy x-ray lab in Ahmedabad with a persistent cough and dramatic weight loss, I was as aware of TB as I was, about a stronger viral infection. TB (tuberculosis), was just a word of science until then, a fleeting fact learnt at school. All I knew about it was that it is an airborne disease that was prevalent in the older times. I was unaware of all the stigma and baggage it brings, especially in our society.
I still remember how my grandmother, who was accompanying me to the x-ray lab, reacted to the sinister proclamation of the radiologist – that I have TB and it has spread quite a bit in one lung.
A woman who had loved and supported me always was so shocked to hear those words that she told me not to tell anyone that I had TB and not to call my parents immediately to inform them. I didn’t understand it then, I do now.
Some might think why she reacted so insensitively in the face of such a sudden setback. It is our society which has tarnished the word illness into a dreadful and stigmatized disease.
Why can’t TB just be looked at as an illness? Maybe like a dangerous form of a common cold? Why do we think of the patient and their families as culprits? Why do we turn away from them? Make them feel like criminals?
Yes, it’s infectious, but one-third of the world’s population carries latent TB. Anyone can get TB. Yes, it happens most often to those with poor immunity. But is that their fault? There are numerous misconceptions about the disease and hence ignorance and stigma. For instance, not all TB is communicable. Even when it is, patients become non-infectious very quickly with the correct treatment.
Society, the public health establishment and even communities remain oblivious to the stigma issue. It’s covered up. We are asked to remain silent. We cannot talk about our disease; it’s dirty, it’s despicable. And so are we? How is it our fault? Do you say the same thing to someone with cancer?
The inhumanity meted out to TB patients is a deeply worrisome mistake.
When I was diagnosed everyone was asking me the most insensitive questions. They were only focusing on:
“Why did I get TB?”
“Were you careless with food?”
“Why do you sleep so erratically?”
“Why aren’t you positive?”
“Why do you look so weak?”
“Why do you vomit everything out?”
“Why don’t you feel like eating anything?”
“Why do you not have the energy to walk around?”
“Did your Parents not take good care of you?”
“Is it hereditary?”
All these questions pushed me into a bigger cage of self-hate and doubt. Society stigmatises us, and we stigmatize ourselves. It’s a vicious circle and self-defeating one. We cannot break the cage or end the silence.
Instead of focusing on what can be done to change or improve my situation, all my energy and peace of mind was disturbed. I was anxious, doubtful, full of confusion. Why me? I barely had the energy to walk out of my bed, let alone research on the internet about remedies or developments in the field. And this state of mind added to my pain.
Those few friends and relatives – who like me had never heard of TB – saw all the ghastly stories and deadly reputation that TB has only, and they too started avoiding our house and me. I was suddenly more isolated than ever before. The isolation from those who we counted our own, is what hurt most.
We hate ourselves too. We hate our bodies, our lack of strength, for not being resilient enough to fight TB. When in fact, it was the job of the medicine to fight the disease.
Incorrect diagnosis and treatment for three years had worsened my disease and depleted my strength. I had lost a staggering 22kgs because TB patients who’re given incorrect medicine do not feel hungry. Poor breathing capacity, meaning I could barely climb two flights of stairs to my best friends’ wedding, let alone dance there. I had a brown tint to my skin which had cracked because of extreme dryness. It is a common reversible side effect of a TB medicine. I had never realised how shallow so many of my friends, relatives etc. were when they would keep looking at how my skin colour changed so much. And some even today, ask me about when the medicine will get over.
How does skin colour define beauty or acceptability? How does body shape define beauty or acceptance? Does TB kill the humanity in others? I struggled with these questions.
The biggest stigma, even bigger than TB perhaps, was the stigma associated with my Deafness, a common side effect of an injectable medicine for TB – Kanamycin. I was left to reading the expressions of dejection and hopelessness and anger on my parents and sister’s face to understand what people would say about how careless we all have been for not getting a cure for TB. How could they see a wasted body?
The isolation from people because I couldn’t talk or hear, pushed me to a point that I had finally given up. Just once I asked my mother, “Let Me Go” – and that moment she pulled me up from my bed and promised me that she’ll never leave me. Yes, that moment is all that mattered. Love, hope, strength-everything came from there.
Within a week of that moment, my mother took me to Dr Zarir Udwadia in Mumbai. Dr Udwadia treats a patient with grit – with a deadline – he knows that the first test is the crucial decider of which drugs will work. He solves problems – always. He tries to help any patient in any way he can.
It was because of his goodwill that I was approved for Bedaquiline twice for six months and twice for Delamanid too – all in three years. These drugs remain unavailable to most TB patients in India. He, along with like-minded TB activists, helped in arranging funds for my Pneumonectomy via an online Fundraising Campaign.
As I defeated TB, the need to shatter the silence around it was overwhelming. I needed to speak out. To let others know about the fight but also the inhumanity meted out to TB in our Indian Society. After learning from six years of society’s double standards, I opened up online about the struggle, mainly a financial one, in fighting this disease. I refuse to give importance to anyone who cannot respect the struggle and who cannot comprehend that TB can happen to anyone. Healing a patient with some kind words is also enough, but not the isolation. I now ask everyone just three simple questions:
Stop stigmatizing TB. Stop it!
You are killing people with your ignorance and hate.
Be humane, not just “human”.
Stop stigmatising TB now!
Survivors Against TB is a community-led movement which is fighting towards strengthening India’s fight against tuberculosis (TB). This article is a part of a campaign on TB and stigma. While India is home to the highest burden of TB cases, awareness remains poor and stigma widespread. In extreme cases, it also leads to discrimination at workplaces and schools, social isolation and neglect. Why is it that in India, where one Indian dies of TB every minute, we discriminate against this disease? How do you address a disease when you cannot talk about it or admit that you have it? The purpose of this campaign is to highlight the detrimental effect of stigma on TB patients. Stay tuned to know more.