“Who will marry me? Who will marry my siblings? Why should I not talk about it? Is it because I am a woman?”
These were my next worries. It was the year 2009 when I was battling one of India’s most dreaded diseases – tuberculosis (TB).
I, for the longest time, didn’t want to share my story with anyone. I had begun to consider TB as my dead past. I didn’t even want a mention of TB in my future – only because, as a woman, I didn’t want to lead a lonely life.
Why do we fear society so much? Especially when society rarely comes to our rescue? We have to fight our own battles – alone.
Yes, I am a TB Survivor. I had TB when I was 26.
Every year around Diwali I start coughing. Spending these days in long queues at my local doctor’s clinic was my yearly routine.
In November 2008, I again developed a persistent cough which needed immediate attention. When I consulted my local doctor, he declared me allergic to sweets and fried food. It disheartened me as I knew I wouldn’t be able to enjoy Diwali, this time around as well. Despite that, I followed my doctor’s advice. I took the prescribed medicines and got rid of my cough, for a while.
After a few days, the cough returned and this time it was accompanied by low-grade fever. When I re-visited my doctor, I was surprisingly held culpable for not taking medicine on time. He marked some fields in the form and asked me to visit the imaging centre, the next day.
Looking at my x-ray the next day, my doctor turned pale. I was immediately referred to a specialist who assured me on the grounds that it wasn’t cancer, after all. Just TB. I was confused. Was I supposed to be happy because it isn’t cancer or shed tears because it’s TB? I went with the latter and burst into tears. The specialist recommended further tests to confirm the diagnosis and indeed I had extra-pulmonary TB.
I was worried and asked the specialist whether I would be infecting my family with it. He made it clear that my TB was non-infectious. He further added that pulmonary TB is infectious whereas extra-pulmonary is not.
I started with the treatment under the specialist’s observation. Every morning my father, administered the first dose of TB medicine. Different slots of the day were allocated for other TB pills. And just like that life became a process of managing TB medication.
A week into the treatment, side effects from the medicines made my life miserable. I started vomiting and had a constant uneasiness in my stomach. I contacted my doctor, who altered my dosage. Every 15 days I was asked to get a blood test, to keep a check on my liver.
In a short span though, my body adapted to the TB medication and I started leading a somewhat regular life. I was told that I would be TB free in nine months and began looking forward to that. I was misled.
After 10 months of medication, a bulge was found on the right side of my chest wall. I brought it to the notice of my doctor who recommended a surgery. Meanwhile, I continued with my medication under the specialist’s observation for two more months.
A few days later, when he saw my reports he was surprised. “The glands have enlarged,” he said. “What does that mean?” I asked. “It is not cured.” He said those heart-wrenching words looking at my dad. He scribbled something on a notepad and just like that I was referred to another doctor and another hospital.
Next day, Zarir F. Udwadia, India’s leading chest physician, looked through my papers, in a fastidious manner. He shrugged his shoulders and said, “There are only four drugs for treating TB and they still couldn’t use them properly.”
He made changes in the course of my medication and asked me to get another test in order to determine which strain of TB I had. Soon, my strain was promoted to Multidrug-resistant TB or MDR TB. I was on treatment again with injections for the next two years.
Every three months, I had to visit him with my x-ray and blood tests. I was responding to the second line treatment well. I felt better and became hopeful again. And in 2011, I was declared TB free.
My TB journey was not very difficult. At least, I don’t think so. All thanks to my family, especially my father who financed the treatment. The only thing I had to endure was the physical pain which is a side effect of the treatment. Another side effect that I had to endure was acne. Other than these, nobody around me could tell that I was fighting a dangerous disease.
That said though, TB did disrupt my life at multiple levels. It made everything awry. I had a plan like everyone else – get married by 26; have babies by 29, and see them grow for rest of my life. But dealing with TB taught me a few lessons. I realised that I was craving for an easy life with no difficulties. Surviving TB turned out to be the best teacher for me as I learnt that pain is the only way to grow.
TB is curable. Let us collectively fight against it. The right diagnosis, proper treatment and the much-needed awareness about it are necessary to defeat TB. Fight against TB, not those affected.
Ms Keyuri Bhanushali is an accountant turned copywriter and is now leading a fulfilling life after seven years of MDR TB treatment.
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.