My oldest daughter was diagnosed with tuberculosis six years ago. She was only in her 20s and she had recently been married. She came home to us in Beawar in Ajmer because her her in-laws shunned her for contracting TB. She was already weak by the time she came back. Within weeks, she passed away.
A few months after her death, I was diagnosed with TB at the local government hospital in Beawar. Doctors prescribed TB medicines for me, which I took for nine months but even after a year I did not get better. The doctors then referred me to the government medical college and TB hospital in Ajmer 50 kilometers away. I was admitted in the Ajmer hospital for a week where they diagnosed me with multi drug-resistant TB and started me on a combination of chemotherapy drugs for two years.
The treatment was painful and difficult. I am over six feet tall and weighed more than 80 kg. During the treatment, my weight dropped by half to 41 kilos. I felt numb and weak. I feared that the medicines were damaging my liver. Even after completing the course of medicines I did not feel better. Next, I went to a local private doctor who charged me Rs 3,000 for various tests and advised me to go back to the Beawar hospital. At the Beawar hospital, doctors told me I still had multi drug-resistant TB and that I needed the 24-month long treatment all over again.
I could not believe it. I had had enough.
For months, I have sat in the government hospital like a mad man, waiting endlessly. This is how you are treated at the hospital even if you are patient with a debilitating illness. No one shared any information with me or offered any counseling. People tolerate medical costs hoping to get better but no one likes it when their time is wasted, when their life is wasted. After having last few years wasted like this, I have decided I will not go in for TB treatment again.
I stopped taking the drugs three months ago. I have decided to eat well and work at my taiIoring shop, like I did before my illness. I know I am risking my life and also risking infecting others but I cannot go through this experience where I keep taking treatment for years, only to have doctors declare me sick again. While on treatment, I felt like I had got stuck in a chakravyuh, a labyrinth, an endless spiral. I am scared of ever having those medicines again.
Multi drug-resistant TB has taken a toll on all my children. Two years ago, my second daughter Nisha, who is a masters student, was diagnosed with multi drug-resistant TB. She has nearly finished a course of treatment during which she had to take painful injections for six months. She has been asking me to start treatment again.
My son Suresh, a graduate from an industrial training institute who has been applying for jobs, contracted multi drug-resistant TB last April. What made it worse was that in June, the government TB hospital in Beawar had a stock out of medicines for three weeks. He could not get the drugs or the injections. How could the government hospital just turn us away when maintaining the stock was their responsibility? Suresh complains that his body feels numb because of the medicines. It feels like this sickness is an endless maze in which have got lost, of which we will never emerge out again.
As told to Anumeha Yadav. Yadav received the REACH National Media Fellowship for Reporting on Tuberculosis.