Professional life of a rare disease patient

by Rachit Shah (name changed)

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 some who seemed, really didn’t.

It’s a May 18 morning when I returned home after 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’s 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 remarked, “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’re 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 knocking 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.

It was a hot afternoon, but no one wanted any breaks. The entire discussion seemed to have ignited fire under Aarav’s chair.

“What was the hardest thing to let go 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.

My eyes opened after almost an hour leaving me completely surprised finding two schools, to the discussion now. Everyone was stuck to their respective places.

Vihaan was waiting for me to rejoin and said “currently the most important consideration is health and nothing else should matter to you.”

This statement annoyed me more than I ever imagined.

“Oh really, Early Mornings reminds me of driving down to work with some soothing music, the office ambiance, the coffee aroma, meeting like-minded co-workers, social and behavioral reinforcements and having a disciplined approach, shouldn’t I be missing these things?”

“One of the side effects of this entire episode is being on the shelf not working full time anymore. Do you really know the costs involved and its future implications with no Government aid system?”

I feel lucky to have been considered to work from home by a well-known Real Estate company in Mumbai.

But Aarav was mentioning that “currently your energy and body pain levels have oscillatory pattern throwing enough surprises from time to time.”

Yes very much….. This reminds me of an interesting concept called ‘The Spoon Theory’ which states the difference between those with ‘limited energy reserves’ versus without. Healthy people typically won’t bother on the amount of energy expenditure versus a chronically ill person who has limited reserves to get through their day.

“It’s difficult at times,” I mumbled.

“How is it going with other patients with similar symptoms” asked Aarav.

Rare Disease patients are increasingly confronting their actual issues to find solutions for a better tomorrow.

This time it was Myra who asked in anticipation “what’s up with the Rare Disease portal that the Health Ministry of India is designing on your request”.

“Now that’s the question only a journalist could ask after waiting that long,” Aarav said with a smile.

“The work is in progress and being supervised by some of the best talents in India and should be up anytime soon.” I’m sure it would help patients pan world.

Have you spoken to doctors about this?

Most doctors who treat patients feel unsure how they could be involved in patient’s return to work.

What’s your primary reason to write?

It makes me feel sad to admit that humanity is turning into a very selfish game, trust me, not a single person except my family members came forward to do anything out of concern. Without naming anyone in specific I only heard from people with motives to use my writings and gather information.

My writings are just an initiative to raise awareness and share my experience with patients, their families and request authorities who could extend their hands to be a part of this social expedition.

To end this note:-
These are crazy times,
Seems waiting for recovery has become my pastime.
Get me some relief; the pain hits me quick,
But my intuition tells me it’s not here to stick.
Though sometimes I wonder, what’s happened to me now?
But I am sure to be Surfing someday in Macau
Though the toughest times seems to have passed,
Because my self determination didn’t let it last.
Currently, gradual return to work seems more viable,
As the day again has arrived to prove myself reliable.
The market graph leaves me craving and the economic charts make me high,
Those old days for sure had some eagerness to hit the Bull’s eye.
This is for the sake of old times, learning from ignorance and accumulating all the tolerance,
Tell them, I’ve not gone too far to return
I have already taken a U turn.
Though I might experience some struggle but you won’t see me fall,
As I have never chosen to crawl.
I am answerable to my destiny and won’t deny,
That, I’m not giving up easy like any other guy

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