PC: Rohit Saha
I was 17, a lively, ambitious and an inquisitive teenager, looking forward to an eventful college life at one of Mumbai’s most prestigious colleges when a disease named tuberculosis (TB) struck me. TB was just a term I had learnt in school during science lectures – that it’s a disease which inflicts the lungs.
But I was diagnosed with a special form of TB- one which infected my intestines. ‘Does TB attack body parts, other than lungs?’ Countless questions whirled in my mind as the doctor informed me of his prognosis. So, in 2007, as India celebrated its 60th year of Independence, I felt my freedom slip away like sand through my fingers.
The freedom to be who I was; to be able to enjoy a proper college life — some of the most cherished years for anyone – due to the 18-month-long, arduous TB treatment.
The treatment left me dizzy, nauseous and with a low self-esteem. There were some obvious questions – why how did it happen to me? Did I do something wrong?
I was too young and found it difficult to deal with it. Apart from dealing with the side effects, a difficult part was the silence around it. I was in college, young, suffering and unable to talk about it. The first time I contracted TB, the doctor had strictly cautioned me to conceal my disease status due to the stigma, misinformation and misconceptions around TB.
Once cured in 2009, I thought I was done with TB. My doctor gave 100% assurance that TB is my past. But, the disease resurfaced in 2013, and time with a greater vengeance. As my condition deteriorated swiftly, I was told that six surgeries were needed in my abdomen, not to mention a 3-month long hospital stay to remain alive.
After the ordeal of surviving the surgeries, I had to go without any solid food and survived on just sips of water and intravenous nutrition for two months. It led to baldness and a massive knockdown of weight (25 kgs, precisely). While I was grappling with my health, the biggest curveball was thrown at me in the form of deafness. I lost over 90% of my hearing, two days after my 24th birthday in November 2013. I quietly slipped into depression.
PC: Rohit Saha
All along, apart from close family members and selected friends, no one knew the exact nature of my disease and disability, while I waged a battle against TB for eight years. “What happened to you, Nandita?” “Severe intestinal infection”, a vague term I often used during my treatment to mask the name of my real illness. Why did I do that? Perhaps, driven by the knowledge that I was suffering from a disease that is only spoken in hushed tones behind doors? Or that the stigma in my case was two times – TB and disability? Or that I felt, mentioning the T-word would paint me as ‘weak’ and ‘defeated’?
There existed the physical challenge of battling TB and then there was the mental one. No one tells you about the mental strength you need to fight TB apart from the medicines.
Far from it, fighting TB is a tale of power and strength. Every day is a battle with the disease, with yourself and with the world. Yes, you could be mocked for the change in the colour of your skin due to medications; you could be taunted for looking “too thin” and not “being fed well”; you could be asked to stay away, even when your TB is non-infectious and there could be taunts about you not being ‘brought up well’.
But here’s the deal – don’t let the naysayers win. Don’t give up the battle. Don’t ever feel you are lesser than anyone else around.
Self-stigma in TB patients often manifests as shame, guilt and self-loathing. The only way to overcome these self-harming beliefs is to educate yourself extensively about your illness and treatment. Read up from every possible source, leaving your fears behind. Never hesitate to question your doctor and clarify your doubts, even the minutest of details. Reach out for help and counselling to understand your illness – it’s not a sign of weakness.
And finally, know this, you are not alone. TB affects millions. We need to break this wall of silence!
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