Professional life of a rare disease patient – Part 2

Continued from Part 1

My eyes opened almost after an hour leaving me completely surprised when I found two schools to the discussion now. Everyone was still stuck in their respective places.

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

This statement made me fume more than I could ever have imagined.

“Oh really, early mornings remind 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 Aunt was mentioning that “currently your energy and body pain levels have oscillatory pattern throwing enough surprises from time to time.”

The Spoon Theory – beautifully illustrated by Dysautonomia International and reproduced here from their website.

Yes very much… This reminds me of an interesting concept called ‘The Spoon Theory’ which sums up the difference between those with ‘limited energy reserves’ vs those without any energy reserves. Healthy people typically won’t bother on the amount of energy expenditure vs 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. I would like to quote some patients suffering with Isaac Syndrome from a survey about work life post diagnosis that I conducted in May 2018 on my Facebook page. As per their requests, I am keeping their identities discrete.

• Ms A: Rare disease for sure is partial disability. Hope this article could help all of us. No career anymore.

• B: I couldn’t work. I had to close my business in the past because of CFS.

• C: Can’t even think about it.

• D: There are no flexible hours, had to give up. What about you?

• E: Are you in UK? Visit www.gov.uk/access-to-work. I took some help

• F: I can wake up and need to sleep for another three hours without reason. Or, I may wake up bright eyed but by the time I’ve said hi to my mum, and fed my dog I crawl back into bed for a nap. I work from home as and when my health shows a thumbs up.

• G: Not working. I so badly want my finite, neatly counted number of “spoons” so I can figure out how to use them effectively. Unfortunately my body doesn’t seem to have them

• H: A worthful person in no time transforms into a worthless patient. I sometimes work from home.

• I: Every day up about 7 breakfast back to bed for about 3 hours, still not fully alert till after dinner. Do you think I can work with these symptoms?

• J: I need to do everything in the morning as by afternoon I am shattered and struggle to think straight. I also get very intolerant and narky by afternoon.

• K: My physiatrist told me to try a Fit bit to keep active. Yesterday I started off with so much energy and I did a lot of activity. By 5 pm I crashed and pain has been very high. My resting heart rate went into a dive again. It cycles like this for me every other month.

• L: I think it depends a lot on what kind of activity or work one is into. I have started baking and since it requires physical work, I need to retire sooner than if I was on desk.

• M: Hey you mentioned to priorities your work each day and can get through it. What kind of work do you do that gets you through the entire day? I am so keen to know so I can try my hands on something that is doable.

Have you spoken to doctors about your return to work?

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

 Work is not an exception but a prevailing attitude and tying hands on returning gradually back in stages, is healthful. Only good intentions will not prepare a tasty soup, it’s the implementation of a proper recipe that does the trick. I feel sorry to mention that our Government is trying to make a difference but how much do you think is felt on the ground? Although the estimated budget expenditure on health, education and social protection for 2018-19 is now Rs.1.38 lakh crore, a 13% rise over the estimated expenditure of Rs.1.22 lakh crore last year, there are still enhancements required:

• Reporting System: there is a huge difference in reporting on a story and simply making up a story
• Close interactions with NGOs, Societies and Patients
• Insurance companies should have user friendly clauses to help patients and their families
• International collaborations are required to find a common platform where patients can get proper aid
• Corporate Social Responsibility (CSR) towards rare disorders needs to be administered in a way we haven’t seen before
• with a patient’s real time experience, an organization could learn a lot and have a sensitive side towards humanity
• flexibility in work timings
• boost morale
• amplify a patient’s presence
• wellbeing of physical, mental, social and financial security
• monitor speed in the process of recovery
• patients should feel wanted to regain their self- confidence
• change is inevitable

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 mentioned 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 across the world.

Why I write about my experience

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.

As Larry Brown once said: “You have to do something in your life that is honorable and not cowardly if you are to live in peace with yourself.” Therefore, 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.

The fact, you read this article right till the end makes me feel HEARD!

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 seem 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.

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.