The suspense was endless. After months of oscillating between a bad sinus infection and a form of cancer, my diagnosis for tuberculosis seemed decently-placed, somewhere in the middle of the two extreme scenarios.
I live with my parents in Ghaziabad, 43 km from Delhi, and was diagnosed by a doctor in Meerut. It was a non-pulmonary form of TB. The first MRI scan in 2014 reported several “conglomerate ring-enhancing lesions” in my brain. But the journey was not easy.
The early – and only – symptoms included headaches, high fever and mild weight loss. The first diagnosis, by a doctor in Ghaziabad and based on an X-ray scan of my brain, said I had a sinus infection.
Because there had been a recent case of TB in my family, I also underwent a skin test. The borderline results, however, confirmed nothing. I showed no signs of TB – no cough or major weight loss. For all practical purposes, TB was not my problem.
The sinus diagnosis and the treatment didn’t help though. I went from one doctor to another but to no avail. The doctor later advised my parents to consult experts in AIIMS or Apollo. This was the only time I had a meltdown during this four-and-a-half-year ordeal. I was filled with self-pity and felt like my days were numbered.
The attitude continued for a long time, till I was finally asked to get a CT scan of my lungs and brain by the doctor in Meerut. The inside of my head was a literal mess but my lungs showed miliary shadows, suggesting a form of tuberculosis. After two months, the culprit was found.
I was put on first-line drugs to treat TB and my body instantly showed positive results. The fever was down to 100 degree Celsius from 104. But the side effects were plenty: nausea, joint pain, and difficulty in walking because of increased uric acid levels.
Dealing with trauma
As a 23-year-old, I was more concerned about my career than the trauma of the disease. I was trying to enrol for a journalism course and got through a government college in Odisha. The decision to move to another state appeared implausible at that time, but I am glad that my parents didn’t let the disease get in the way. I might always be remembered as the “sick girl” in college, but my academic performance was better than most of my other classmates.
Even when I started working full-time and was put on anti-tubercular treatment, I did not let the disease dictate my way of life. But despite that, it was a difficult experience. There were instances when I couldn’t move my shoulders or would forget things. Sometimes, I was unable to find my way back home. One time my temperature soared so high that my parents had to rub a bottle gourd against my palms and the sole of my feet.
It was difficult to do things on my own – not because I was physically weak, but because I had lost the confidence to do things independently. The psychological trauma and not having anyone to explain its impact on my mental health made it worse.
For a long time, I wallowed in my misery. It was unbearable to see people my age travel the world and achieve so much. The worst of all was the uncertainty. Despite being put on anti-tubercular treatment and showing positive results, no doctor or expert confirmed that it was TB.
I was neither tested for drug-resistant tuberculosis nor was my cerebrospinal fluid checked because the bacteria hadn’t reached the fluid. The only thing that could be tested was a small piece of my infected brain. But the procedure was too complex to be performed and though the healing was slow, it was happening.
Tackling self-pity isn’t easy but in between multiple visits to the neuro centre in the All India Institute for Medical Sciences, I made peace with my situation. I was no longer crying over the excruciating pain and could walk without assistance.
In fact, I was one of the fortunate ones. I had a supportive family that never complained and did everything to ensure my comfort. There are various levels of lack in the TB patient care in India. From primary concerns such as a timely diagnosis, poor nutrition and low awareness, to irrational and deeply-ingrained myths, almost-no mental health support and low knowledge on after-care – a lot needs to be tackled before India can eradicate TB.
It has now been a few months since I am off anti-tubercular treatment. The experience has altered my life: It has strengthened my relationship with my family, made me more patient, calm and empathetic. I have probably become the best version of myself. The most important takeaway has been this: Defeating TB may be difficult but it is worth putting up a fight.
Bulbul Sharma is a teacher and former journalist. She fought and survived TB at a young age.