It all started quite suddenly in December 2020. I had a severe headache and bouts of vomiting. The doctor prescribed tablets for migraine and a sinus infection. Two weeks passed and I continued to experience persistent headaches, vomiting, loss of appetite and weakness. I was becoming dysfunctional. Then, one day, I lost consciousness and had to be hospitalised where I remained unconscious for 18 days. Surprisingly, the doctors were not able to diagnose the cause of this condition.
After 18 days, my family transferred me to another hospital in Bengaluru. There, I was in the intensive car unit for seven days. After visiting four private hospitals in Bengaluru, I was finally diagnosed with brain tuberculosis, spine tuberculosis and communicating hydrocephalus. It had now been a month of suffering, stress and bills piling up. The hospital was expensive and, in view of limited financial resources, I was transferred to St Johns Medical College and Hospital, Bengaluru, where my tuberculsosis, or TB, treatment began.
As a brain and spine TB survivor, I want to share my story as a conversation from one TB-affected person to another. Why? Because I am one of millions who struggle with this treatable disease that devastates lives and changes them forever. My story matters to those who struggle like me.
At St Johns, I was unconscious for 45 days. The day I recovered consciousness, my whole world turned upside down. I got to know I could not walk on my own. I had to use a catheter for six months and adult diapers too. I was only 24 years old. This was not anywhere in my life plan. Between disbelief and pain, I kept thinking this was not my life.
I was discharged from hospital after two months (one month after being diagnosed). I was bedridden for five to six months, but I was being treated. The medicines had a lot of side effects and coping with them became a part of my life.
No one tells you that getting the right treatment is one thing but coping with it is another. I used to vomit every day after breakfast and had rashes all over my body with a lot of itching. I had constant tingling in my feet and felt numbness. Hospitals became familiar places. I had to visit the hospital every 15 days and underwent tests like liver function, kidney function and more.
Calling the entire ordeal a nightmare would be mild. I experienced intense mental stress and low self-esteem due to the horrific side effects of TB medication. You want to talk about it but you often cannot. You do not know whether it is the pain, the anger or frustration.
After four months, I began walking with support. During the treatment, my bones got weak and brittle, for which I had to take an injection along with vitamin and calcium tablets.
My greatest support was my family. I had to be admitted to a private hospital because of the quality of patient care that is absent in public hospitals. My family faced financial hiccups and had to take out a loan for my treatment but they never gave up. I did not face any social discrimination due to TB either from my relatives or society. Brain TB is not contagious and people nowadays understand this.
Currently, I am on the verge of completing TB treatment and am feeling good. Life seems to be slowly creeping back to a sense of normalcy. My career was affected and I have still not been able to resume work. Whenever I get some time, I post TB-related videos on YouTube to spread awareness, and thankfully, other patients find it inspiring to some extent. I feel I need to reach out to others like me and help them cope .
The experience of TB diagnosis, treatment and medication was mentally traumatic at the beginning but I learned to live with it. I kept myself busy with hobbies and hoped for good things. I spoke to other TB patients on Instagram and tried to help them. I wonder sometimes what happens to those who cannot cope?
TB is terrible but with proper diagnosis, treatment and care it can be easily overcome. Yet, the odds are stacked against those affected – from finding the right diagnosis and treatment to coping with side effects. Then, there is isolation, stigma and loneliness. TB-affected individuals need all the help they can get. I want to talk about TB because the fight against TB made me a strong and better version of myself. I want my story to help those who need support. From one survivor to another – let us help each other.
March 24 is World Tuberculosis Day.
Arati Subba is part time content creator and a fellow with Survivors Against TB.