TW: Mention of suicidal thoughts.
Mumbai, the city of dreams- that’s where I was born and raised. Like all of those young people in the big city, I was ambitious with dreams in my eyes. I was found to be infected with Tuberculosis when I was 18 years old. At that time, alongside being a B.Com first-year student, I was also involved in many extracurricular activities. During this time, bad eating habits and hectic daily routines, perhaps made me vulnerable to TB. I started getting a fever every evening, which went away by the next morning. I had been coughing since the past 2-3 weeks. I didn’t take the prescribed medicines on time and I also started seeing symptoms of TB.
Young people think they are invincible. Not true. A chest X-ray showed that there were white spots in my chest. My family doctor recommended me to a private hospital’s chest specialist. I was diagnosed in two ways by him. The first diagnosis said I had first-line TB, while the second one confirmed that it was second-line TB. But the doctor, at that time, found it more appropriate to start the treatment for the first-line TB.
After 4 months, my reports showed that a few medicines were not working, and that is when I was sent to a government hospital to get treatment for MDR TB or multidrug-resistant TB. There, I was told to take medicines for about two years and injections for a period of 6 to 8 months. I used to get all of these for free from the TB centre near my house. The challenges I faced were unprecedented weight loss, body ache, difficulty in walking, suicidal thoughts, loss of vision. Every day, while I was fighting all of these problems, I believed things would get better.
Almost a year into my TB treatment, my mental health started to suffer. I had major mood swings. At times, it was difficult to express my feelings, and I chose self-harm as an alternative. I used to have bad thoughts about my family and my future. This was when I sought help from a mental health professional. I was diagnosed with depression and given treatment.
That’s when I realised, TB is not just a physical fight, for many it is also a mental struggle.
During my MDR TB treatment, I was in my second year of B.Com. Many suggested taking a break from studies. My dreams didn’t allow me, and I decided to continue. I convinced myself that whatever I was going through today, was only going to make me stronger and better. I turned to spirituality and saw positive changes in myself after I started doing Rajyoga Meditation at the Brahmakumaris Centre.
Because of this positive thinking, I successfully finished my B.Com studies and also finished a course on Industrial Accountancy. There was a time when during my exams, there was no electricity at my home for three whole days. It didn’t stop me, instead, I used to go and study at my friend’s place.
During treatment, I had full support from my friends and family. My family understood my problems. From nutrition to ensuring fulfilment of everything needed – they provided me with economic, mental and emotional support. My friends also helped ensure I ate properly and I didn’t feel lonely. Sometimes, they even accompanied me to my checkups. In this struggle to achieve freedom from TB, my friends and family were my greatest source of power.
I had to face other challenges too. The doctors of the government hospital were neither kind nor patient. The people at the medicine centre routinely treated TB patients badly. There was no lift at the medicine centre and thus, we had to always climb stairs to reach the fourth floor. I used to almost faint a lot of times too! The medicines provided by the government were sometimes of low quality. Despite this, my dreams and family helped me persist.
My father is an auto driver- who did everything that was required. I did not face any financial problems during treatment. However, for the treatment of ADR (Adverse Drug Reaction), I was supposed to travel to another hospital, and I had to handle all the travel expenses for it. The government provides TB medication for free, but the expenses of multivitamins, calcium, etc. are all borne by the patients. Under the TB scheme of the government, all TB patients are given 500 rupees every month, but this money never reaches the patients who need it on time- and for this, we have to visit the government offices multiple times.
I am stronger, wiser and more determined than before. I chose to tell my story because thousands like me remain silent. If we want to finish TB from its roots, then the treatment system, the healthcare systems, should be immediately improved. It is necessary that every patient gets regular counselling, information and support. The government nutritious food scheme should also provide all patients with compensation of a minimum of Rs. 3000 every month during treatment. This will enable all patients to get their treatment done without any economic distress and in dignity.
Finally, don’t let the patient forget that TB is not their fault- stigma is often more harmful than the disease itself.
Yashwant Marathe is an MDR-TB Survivor, Patient Advocate and SATB Fellow based in Mumbai, Maharashtra.