Why does this happen to us?

It was in 2015, when the Medical team saw this lady. She was in severe pain. Pain due to blood supply to her hands compromised. Couple of fingers were already blue, showing signs of early gangrene. She also was running high fever, with swollen joints, and most of her hair gone. Her blood tests revealed moderate renal failure too. The medical team had come to a diagnosis of an “immunological disorder” – Systemic Lupus Erythematosus, with multiple organ system dysfunctions, and was trying to communicate to her in laws, the need for immediate intervention with drugs to suppress her immune system, and the need for a life long treatment. She was from a lower socio-economic back ground and had no way of supporting herself.

The in-laws didn’t seem interested. They had only one concern – how many days and how much money would it take. She must get home as soon as possible and take of her children and the house. She had four kids and her husband (their son) was away. After much negotiation, the father in law agreed for a few days of hospitalization. The treatment started with high doses of immunosuppressants. After a week or more of a stormy hospital course, she was ready to go home. But to be on life long follow up and treatment if she is to be kept alive and functional! Again, started the negotiations with the in-laws – reluctantly they agreed. The lady had nothing to tell the team, she was a silent by-stander to these negotiations on her life and treatment being taken up by her in-laws.

She went home but the medical team had no expectation of seeing her again. But to the teams’ surprise, she was there in the out-patient department after two weeks, for a follow up. By then she had developed a pneumonia, the effects of a suppressed immune system. But she was confident and sure, that she wanted to be on regular treatment. Her tenacity surprised the treating doctor. Unlike the usual women from the local community, against the desire of her in-laws, she was willing to come and get treatment, come what may.

Her regular visits continued without fail, and she slowly started improving. Almost a year into her treatment – one day she asked the doctor. Doctor, can I have a “tubectomy”? The doctor asked the whereabouts of her husband – the one who has been missing from the scene for the last year or so. She reluctantly shared part of the story – he is in jail, for no wrong of his, will not be out for three years or more. The doctor in response asked they why you need a Tubectomy – she replied, “Mahol accha nahi hei”. The family context is not good, she stays in a joint family system and her in laws are not treating her well, and she is afraid…. The unsaid fears were understood, she was referred for tubectomy – she never got it – reasons unknown to the team then.

6 months passed – she returned one day for her regular follow up, tubectomy still not done. On asking reasons - she said, I am afraid – if something happens to me, my children will be orphans. The family situation is not good, my in-laws are not behaving well, and I do not want anything to happen to my children. I will go through what ever I must and wait it out. Another few months passed, she had been regular on her medicines and visits. But some where during this time, her in laws were no more to be seen, she was off and on accompanied by her mother. 

It was a week back she walked in all worried and disturbed. Asked the doctor – please get my pregnancy test done. The doctor who knew her story asked, are you suspecting pregnancy? She said I want to know – she was sent off for a urine test which revealed that she was not pregnant. Once she settled down, the story came out. Her husband had come out of jail but had moved out of the state to Jammu for work. She had visited him and was afraid that she had conceived. Her abdomen was swelling up which she was sure was a pregnancy. An abdominal examination revealed that she was having large amount of fluid in her abdomen – due to Tuberculosis of the abdomen! An infection secondary to her immuno-suppressed state.

The story continues 4 years since the illness – no signs of “they happily lived ever after" ending – she continues to struggle with her illness, her relationship with her in laws, husband away 2000 miles away trying to earn a living to support her and children. 

Her mother turned to the doctor and asked a question – will she live…? Why does this happen to us? A difficult question to answer - yes she will live, but why does this happen to her and such families who are caught in complexities of life...

May be the question for the treating team should be - what good can we bring out of this situation - how can she and her family find meaning in the midst of such meaningless suffering....