Professional life of a rare disease patient – by Rachit Shah

Deep realization somewhere shifts my focus implying ‘People see the DISEASE in you, before they see YOU.’ I often wished more people could have understood the invisible side, even those who seemed, really didn’t.

It’s a May’18 morning when I returned back home from visiting my neurologist in Jaipur. My so called big picture work legacy was being discussed and how this disorder took a toll on my profession by two of my cousins, Myra, a journalist and Aarav, a business owner.

For a moment I stopped and wondered if it is about me or by me??

I had worked for 12 years with well known Investment Banking institutions. The job of a Banker is always to deepen mystery but I always admired what I did. Economics is extremely useful as a form of employment, specifically for people dealing with money day in day out. Not sure, how I recalled a funny incident where my ex-colleague had softly mentioned “you don’t have to be crazy to work here, we will make you one!!” I couldn’t stop laughing as the episode played in my mind leaving everyone wondering.

Minutes later, another cousin, Vihaan, an orthopedic doctor by profession, walked in with a wicked smile on his face seeming to know about the ongoing conversation and said “Rachit, I heard you are gathering all the muscle, trying to get back to work.” “Yes you’re right bro. I wish to start working from home initially till I realize my lost stamina is knocking at my door again,” I said.

Hearing that my Mom appeared from nowhere and said the concept of working from home in India will take some time to evolve and currently is as rare as his disorder. My Mom had recently started to read a lot and mentioned something very informative. “Convalescence” she said.

It left us flabbergasted and she continued with a confident voice “though it’s a more realized and respected theory internationally, it’s the gradual return to health while you still need time to recover from illness or medical treatment, usually by resting.”

“Rachit is some-what going through this phase,” she added.

I was pleased to know that people around me are gathering all important information to educate each other and find solutions for my bailout. It appeared that she had something on the rocks (lol) that day. “Anyone who has experienced a period of prolonged illness would need ‘Support beyond the Pill.’ As ‘Backward integration’ is expected to improve efficiencies and provide economies of scale, the theory of ‘Support beyond the Pill’ can improve and bridge gaps between the patient and his minute requirements to complete recovery,’’ she added.

Aarav seemed the most curious one among the lot as my Mom continued.

The Support System could include “adequate rare disease insurance, compulsory Corporate Social Responsibility (CSR) initiatives, work from home facilities and a supportive Government who could simply stop and listen to what patients are telling them.”

Though all the mentioned points were food for thought, the most striking point for me was work from home facility.

“I am not sure about others, but for me, working is a way to boost my morale during treatment, it’s an aid to accepting my new reality, become more communicative, constructive engagement of my mind and body, a complete ‘no’ to financial dependency and most importantly conquer daily goals and feel accomplished.

Though it was a hot afternoon no one wanted any breaks. The discussion seemed to have ignited fire under Aarav’s chair.

“What was the hardest thing to let go of and your most difficult experience in this entire journey?”

“Sacrificing my Freedom,” I arrogantly said. From career to my favorite cuisine to skateboarding to walking long distances, there are many more in the list and the most difficult challenge can be described in two words: Keeping Sanity. I thank God each day to have gifted me with enough stamina to deal with all this (which is not vanity but a path to sanity).

My phone alarm rang indicating it was time for my daily dose of well-being. I took a couple of minutes break post my medication and didn’t realize when I fell asleep.

To be continued

Editor’s Note: We thank Mr. Shah (name changed) for coming forth and sharing stories of his experience of living with Issac’s Syndrome (also known as Isaacs-Mertens syndrome, continuous muscle fiber activity syndrome, and quantal squander syndrome). The views expressed in this article are those of the author.