Diagnosis or Doom?
-Written by Dr. Tejal Lathia
When I was a medical student, I prided myself on learning the names of rare syndromes, the pieces of the puzzle – organs affected in a unique pattern, genetic mutations, and the mode of inheritance.
A lot of accolades came my way especially in quiz contests where this knowledge was highly prized. I remember a State Surgical Quiz that my college won because I could identify syndromes described in little poems. As a resident training in medicine and then Endocrinology, I had this knack of identifying syndromes just by looking at a patient – my brain seemed to just sort the pieces of the puzzle on a subconscious level to come up with the right picture (diagnosis) in seconds.
I also cannot forget the glee I felt at clinching the syndromic diagnosis, often calling friends and colleagues to boast about my smartness. Our professors lauded us for being smart enough to remember them and it was considered that you were a “good” and “interested” student if you could recall the esoteric names at random.
Never in these 13 years of training did I stop to think about the impact of this diagnosis on the person’s life. As a medical student, I didn’t need to treat these people. As a resident, I did not shoulder the burden of breaking this diagnosis to the person nor was I fully responsible for the treatment.
It was only in practice when I became wholly responsible for caring for people with rare syndromes like MEN – Multiple Endocrine Neoplasia that I realised the full impact on the person’s life. These syndromes which are a collection of tumours from pituitary to pancreas to adrenal to thyroid wreak havoc in the person’s life.
From the cost of making the diagnosis (running into thousands for genetic mutation testing and numerous scans), multiple painful and often life-threatening surgeries (like pheochromocytoma), recurrent disease and sometimes death – it was a horrible syndrome to have.
Even more agonising was the job of explaining the possibility of the children having a similar life history. A parent can bear almost anything but the spectre of passing on the burden of death and disease to their beloved children.
Though making the diagnosis is important from a treatment perspective, gone is the glee and smugness. It is replaced by a muted compassion for the long, costly, and painful journey ahead. No longer do I call or text friends to share my glory but often discuss with my counsellor the pain and guilt I experience while talking to the patient and caregivers. I often look back in shame at my former self but then I console myself with the phrase – “ I did the best I could do with the wisdom and insight I had at the time”.
I do wish there would have been a mentor or teacher who would have taken the trouble to explain to me that a great diagnosis for me often meant a miserable life for a patient.
Compassion and empathy are not always innate but learned behaviour sometimes.