Whose story is it?

He is a thin built middle aged man with balding hair. Whenever he comes to our clinic, he would stand in one corner quietly with his hands folded across his chest and head bent in what I assume is reverence. So far, I have never seen a smile on his face (except yesterday, read on..). I would classify him as quiet, but I never got the mental picture of calmness. Mr. S, is a tailor by profession and has his own tailoring shop in a village near our clinic. He stitches shirts, pants, and women’s dresses. I have heard from our community health worker who makes home visits to follow up on him that he also has some land in which he does agriculture, usually paddy crop two times a year. 

 

Mr. S has type 2 diabetes which is very poorly controlled. I first saw him only a few months ago. He came one day to the clinic with a panic-stricken face and in hushed tone told me that he was coughing up blood since early that morning. After a series of tests and back and forth interactions with the public health system, we identified that he has pulmonary tuberculosis and started him on appropriate medications for it. It was at that time that I came to know about his poorly controlled diabetes. Prior to this, he was getting treated in Chennai, which is about 80 KM away. His elder brother lives there and he used to go to the doctor whenever he visited his brother. I have seen that when patients don’t have a health facility nearby and must travel long they usually default on their medications, especially long term treatments like diabetes. This was happening in Mr. S’s case and he was not very regular on his medications. 

 

The first time when Mr. S came to our clinic he was accompanied by a super-bubbly young boy, his son. All of 8 years, he was the primary care giver for his dad. Mr. S is the reticent, not-speaking, not-smiling, serious man and his son was in stark contrast to him. He would do all the talking, he would answer all the questions, and even Mr. S would turn back to him to ask for details of medicines that he was taking. His son and I became good friends, and we would have some small talk every time he came. On one hand, it was a pleasure to see his energy and enthusiasm, but on the other, I felt bad that the boy was providing care to a sick father at 8 years, not exactly the kind of life that a child should have. Over the past few months, Mr. S has come to our clinic several times, and each time the boy accompanied him religiously. He would carry his father’s bag, hold his hand and guide him into the room. In our clinic there is a chair for the patient to my right, and just opposite to me there is a chair for the caregiver. Mr. S would sit in the patient’s chair, and the little boy would settle into the caregiver’s chair. He is so small that he would sink and disappear into the chair! But he is a diligent caregiver and would listen to every word that I uttered carefully and repeat them to me. “This tablet, once in the morning, once in the night. Correct doctor?” he would repeat. Assigning responsibility of the care of something serious like uncontrolled diabetes and pulmonary tuberculosis of a middle aged man, in the hands of that scrawny boy was a strange experience. 

 

Once his tuberculosis started getting better Mr. S started working again and went back to the fields. He developed a foot ulcer, and it was a major problem. We did debridement and dressings for his foot over several weeks and slowly it started healing. All the while, through his tuberculosis episode and the foot ulcer episode, the biggest bugbear was his sugar controls. We struggled to find the right tablets for him. Metformin would make him have bowel disturbances and so we couldn’t go up on the dose. Glimepiride would make him get very low sugars, and so that was also not a candidate for increasing the dose. Teniligliptin was expensive, in the initial days of his treatment he could not work and so his financial situation was tight. So, we had to consider that. He vehemently resisted the idea of starting insulin. I spent sleepless nights, wondering how I was going to bring his sugars down. We juggled with various combinations of the diabetes medicines till at some point it looked like we were getting somewhere with the sugar controls. In recent times Mr. S has been one of the ‘difficult patients’. He is a nice man, but his problems have been difficult and extremely challenging. 

 

Yesterday Mr. S and his cheerful son came to see me. The little boy was jumping about and asking me how I was. He told me he ate idly with chicken curry for breakfast and was full of energy! I reviewed Mr. S’s lab report and his HbA1c was 7.4%. This is the lowest his sugars have gotten since the time I have met him. Given the history and given how much I have invested my mental and emotional energies in his treatment I was jubilant. I had a sense of immense satisfaction and a sense of accomplishment. I put out my hand and asked him to shake it to congratulate him on achieving good diabetes control. For a moment there was absolute happiness and a celebratory mood in the clinic. In all these months for the first time I could discern a little smile on Mr. S’s lips. “I am in disbelief! How did this happen? What did you do Mr. S?” I asked casually with a broad smile. 

 

“The Chennai doctor started me on insulin and from then everything has become normal” Mr. S replied. Suddenly it felt like my bubble was burst. I was not sure I heard right. So, I asked him, “What Chennai doctor? What insulin? When did you start insulin?” He went quiet. That is Mr. S, he has word-poverty. Suddenly he ran out of words and went quiet. I turned to his son and he smiled at me and said, “Yes doctor. Every month when we go to our Periyappa’s house (his father’s elder brother) we will see the sugar-doctor. He has been giving insulin” I was completely unaware of this. I have been thinking all along that I was the doctor who was handling and struggling with his diabetes treatment and Mr. S has never given me reasons to believe otherwise. Unaware of the fact that he was taking insulin, I have been struggling with his medicines. At every point when I made changes to his medicines, I have discussed in detail, and he never told me even on one of those occasions that he was seeing another doctor for diabetes. When I proposed that we start insulin, he refused vehemently but never told me that he has been initiated on insulin by the Chennai doctor. I am unable to see why he thought that it is not required to tell me about such a major thing he was doing while all along he knew I was worried and struggling to modify his doses to get his sugars under control. I felt cheated and my emotional investment into his treatment was so high that I broke down emotionally. I had to quickly exit the room and rush to the rest room to compose myself. 

 

While in the rest room, my mind was reeling with so many emotions. But Mr. S is not a bad guy. He probably did not know that is important to tell me. He probably did not realize that I was increasing his doses without knowing that he was getting insulin and that could be harmful to him. He probably thought I would get angry if he told me he is also seeing another doctor. Even if I asked him about all this, I don’t think he would give me a convincing reply. He also did not have a caregiver (old enough to know things) who would advise him about such things. I told all this to myself and came back to the room. I forced myself to maintain my smile and the celebratory mood. I gave a gentle and loving pat on the kid’s back, congratulated him on making his father better and wrote out the prescription and sent them home. But the hurt remained and I couldn’t get myself out of the low feeling of being cheated. I came home and even reflected about it with two of my friends. I went to sleep disturbed. 

 

And then sleep happened! Sleep is the greatest healer, and mind-clarifier. I woke up with a fresh perspective about Mr. S. I no longer feel bad about what happened. The reason I felt bad was because I have been thinking about this as my story in which Mr. S is playing a part. In my mind, I am this super-doctor who struggles to save a patient’s life and I have been cheated. However, this is not at all my story. It is Mr. S’s story. He can use me, he can use the Chennai doctor, he can use anyone to get better. He and his family did what they knew to be best. It was misinformed and wrong, nevertheless it was not something that was done with a bad intention to hurt me. I just saw this whole thing wrong. I no longer feel cheated. I think I have learned a big lesson and such learnings enrich us and make us better clinicians.