Living with a rare disease

by Rachit Shah

Deep realization somewhere shifts my focus to this thought: ‘People see the DISEASE in you, before they see YOU.’ I often wished more people would understand the invisible side, but even the few who seemed to, really didn’t.

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

For a moment I stopped and wondered, if it’s about me or involving me??

I had worked for 12 years with well known Investment Banking institutions. The job of a Banker is to deepen the mystery but I always admired what I did.  Economics is extremely useful as a form of employment, especially for people dealing with money day in day out.

I recall a funny quip made by my ex-colleague: ‘you don’t have to be crazy to work here, we will do that for you!!’ 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, joined the conversation with a wide, all-knowing smile on his face and said ‘Rachit, I heard you are gathering all the muscle so as to get back to work’.

‘Yes, you right bro. I hope to start working from home initially till I can build my stamina.’ 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. Currently it 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 ‘ it is better recognized internationally, and means 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 were educating and equipping themselves with such information, while trying to find solutions for my bailout.

It appeared that she had something on a roll 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, ‘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 the 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, a constructive engagement of my mind and body, a complete ‘no’ to financial dependency and most importantly, a way conquer daily goals and feel accomplished.

Though, it was a hot afternoon no one seemed to want 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 break of a couple of minutes post my medication and nodded off.

My eyes opened almost after an hour leaving me completely surprised finding two schools to the discussion now. Everyone was still stuck to 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 angered me more than I ever imagined.

‘Oh really, Early Mornings remind me of driving down to work with some soothing music, the office ambiance, the aroma of coffee, meeting like-minded co-workers, social and behavioral reinforcements and having a disciplined approach. Why 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 my Aunt piped in: ‘currently your energy and body pain levels have oscillatory pattern throwing you surprises from time to time.’

‘Yes very much….. This reminds me of an interesting concept called ‘The Spoon Theory’ which explores the difference between those with ‘limited energy reserves’ vs without. 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 will cite some patients from a survey conducted in May’18 on my facebook feed, suffering with Isaac Syndrome, about work. As per their requests, I shall keep 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 at about 7, breakfast, then 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 snarky 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 at a desk.

• M: – Hey you mentioned to prioritize your work each day and 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

Work is not an exception but a prevailing attitude and gradually returning to work, 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 though our Government is trying to make a difference but how much do you think gets implemented on the ground?

• The estimated budget expenditure on health, education and social protection for 2018-19 is now Rs.1.38 lakh crore, a 13% increase over the estimated expenditure of Rs.1.22 lakh crore last year
• Reporting System :- there is a huge difference in reporting on a story and simply making up a story
• Close interactions with NGO’s, 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.

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 sad to admit that human life is turning into a 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 right till the end makes me feel: HEARD

Just 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.

Rachit Shah (name changed) is a guest writer for Qrius