In 2018, I had just completed my graduation and was busy with my MSc Degree. Life was filled with work and new goals. Amidst all the stress of studying, one day, my arm started hurting a lot. In a few days, the arm swelled up and my left elbow was burning with pain.
I visited an orthopaedic doctor near my place who diagnosed me with arthritis. I took medication for it for about 3 whole months with no improvement in my condition. So I decided to visit a private medical clinic. In this clinic, the doctors said that it wasn’t just arthritis, and they told me to see a doctor at SSKM hospital in Kolkata.
My father then took me to seek help at SSKM hospital. The doctors here were understanding, they suspected that there was pus in the infected area, and I was told to get certain tests done. It was through those tests that I was finally diagnosed with Extra-Pulmonary Multidrug-Resistant Tuberculosis (MDR-TB).
I was a medical student and added to that my uncle had also been a TB patient and, thus, I knew what TB was, but even I was not aware of MDR-TB. I talked to my doctors about the same and tried to understand what it was. When I asked my doctor about my condition for the first time, he told me: “MDR TB is a little different, a little more complicated and risky than the TB you’ve heard about. But you need not worry. All you have to do is complete your course of medication and you’ll be fine.”
I didn’t have to face any stigma from the doctors or the hospital staff, they were always supportive and helpful, but I think a reason for that was that I had extra-pulmonary TB — it was not contagious. I had seen and also heard about doctors and medical staff in my hospital often discriminating against, and poorly treating TB patients who had pulmonary TB.
Initially, my father was terrified though I wasn’t. Fear started setting in when my medical procedure started — the injections and the pills were just scary. I remember it was 20 June, 2018, when I started my medication from a local government DOTS Centre. In my course, I was prescribed a series of injections and about 13 pills in a single day. The injections for me were the most challenging part of the treatment. I had a total of 154 injections and they were all excessively painful and brought along with them a lot of side-effects.
Side effects are a huge and scary part of a patient’s journey of fighting TB. My vomiting lasted for about two entire years, exactly till the time that my medication lasted. My taste buds were also acting funny. I had excruciating pain in my legs; my eyesight wasn’t as it used to be and I used to hear a ringing in my ears almost all the time. I went to an ENT to get that checked, where they informed me that this was just a side effect of an injection prescribed to me.
This was not all. The side effects of the treatment caused a lot of mental health issues. I would have negative thoughts every day, and at one point, I even had suicidal tendencies. I told my father about my mental health and he took me to a psychiatrist. I was diagnosed with depression. The psychiatrist was of huge help. They told me how this was a side effect of Cycloserine, an important part of my course of medication. I was forced to think: Even with all the advancement in science, why do we use such medicines? The psychiatrist made the journey of this fight against TB bearable.
I was lucky my family and friends supported me throughout this journey and were there for me in any way possible. My extended family was also caring. My friends would keep in touch, ask about my health, and often come to meet me too. My father and the whole family was my biggest support. It made me understand the importance of a supportive family and good friends during illness. I wondered what happens to those who don’t have it.
One day I was scrolling through Facebook where I found a video of an actress talking about how she survived difficulties in her life. From there, I started searching more and more about other survivors in journals, magazines and on the internet.
I started reading up on TB survivors and their lives after TB. It was then that I came across a page called Survivors Against TB, where I saw so many TB survivors talking about their life as a TB patient and how they overcame this life-changing disease. This gave me strength and courage. Their stories motivated and inspired me to keep fighting. I felt like I wasn’t alone. I felt others had faced what I was facing and overcame it and so would I.
At many points during my treatment, I thought I couldn’t take it anymore; continuing treatment was tough and I considered leaving it in the middle, even in my last month of treatment. But looking at the determination of my family and their faces full of hope, and by narratives of all the survivors gave me strength and I decided I had to complete treatment for my family and myself.
Post cure, many TB patients have started reaching out with their concerns. It reminds me of how they are where I was at one point in time and I try my best to give them strength, tell them not to leave their treatment and tell them to hold on and win this fight.
Looking back at my journey, I realise how TB is a test that some of us have to pass and that’s what I tell others too. This is life’s exam, and you pass it, for your family, for other people who might have to give the same exam, and for yourself. Once over, there’s no looking back; you just look forward to all the good things yet to come in your life. TB cannot defeat you; you have to defeat it.
Written by Koushik Nayak