On my way to Ram Shree’s house, a 50 year old XDR-TB patient, I was a bit scared. XDR-TB, which is an extensively drug-resistant form of tuberculosis, spreads bacteria very rapidly. Therefore everyone at office instructed me to take all the necessary precautions.
I met Ram Shree in her dark, isolated room- the doors and windows closed. It immediately sent a message to me that she does not want to see the world around her. I greeted her and was grateful to OpASHA for providing medicines from our center, which is really close to her house. We slowly started talking about her health and her family, and then gradually she started to open her heart to me.
Ram Shree got married 35 years ago and started living in Delhi with her spouse. Her husband worked as a watchman, and she worked as household help. This was the story of a couple who had access to basic amenities for life, and were working hard, supporting the family, and striving for a better future.
Soon her life changed from a working wife, to a doting mother of two sons and a working wife too. In late 2011, she had started to become too weak to be able to perform her work efficiently. Finally, her health deteriorated so much that she had to quit working. Even at that moment, her major worry and regret was that she was no longer able to work and earn on her own. She never wanted to become burden on her family, but today her condition is so bad that she is unable to even get herself a glass of water on her own.
Five years ago she felt a painful lump on her back and went to the nearest ESI (what does this mean?) hospital for a check-up. But they failed to diagnose her disease even after 11 months of regular check-up and medication. She finally went to AIIMS and there she was finally diagnosed as a TB patient. She could have recovered from TB much earlier had she been diagnosed properly, but she had to suffer enormous distress for almost a year as she was being given medicines which not only did not cure her from her ailment but rather had severe side effects.
When she finally completed DOTS, she was cured, but two years later, she was diagnosed with TB again. Then again in 2012 she was diagnosed as a positive for TB and during her treatment in 2012, her sputum was sent for the culture test and she was diagnosed as a MDR-TB (Multiple Drug Resistance). Soon her health started declining rapidly and showed no improvement from MDR-TB medicines. She was admitted in AIIMS soon and there she was declared as XDR-TB patient. She assumed that she will not survive anymore now and her family brought her back home.
I could see around her room and the pitiable condition of the room and her clothes. As the interview went in more and more depth, I kept asking her several questions in various forms to make her say the truth about her family’s support. Finally at a certain point, she burst out with tears and started narrating her true condition that her husband comes to the room once in 3-4 months and both her sons and their spouses also treat her as a burden on the family and ill-treat her and call her names.
While crying she made a very critical statement that, “when I used to earn, people used to like me but now they treat me as burden”. Even the neighbours had changed their attitude towards her. When she was doing fine, before her disease had struck her, a bunch of women used to sit in her corridor to spend their evenings. But nowadays even if she calls to anyone, nobody even comes near her door. I could see that the disease had not only hit her health, but it was a much bigger strike on her economically, emotionally and socially.
It has been 8 months since she started taking the treatment of XDR-TB regularly from an OpASHA DOTS center, and she has started feeling better. There are two medicines which she has to buy on her own for a long time and that is her biggest concern now. I could see that good health is such a blessing; access to supportive family members is only a gift to the lucky few and medical support and regular medicines is indeed a rare luxury.
Written by Shikha Rana