Even in 2021 as health emergencies trick our well-being and travel countries, singing cautionary tales with an incremental disaster, it is critical to understand how individualistic attributes could help overcome limitations and conquer triumph over adversity.
Imagine a rare health condition personified in flesh and blood? Sounds weird, isn’t it? But...I’m living this unbelievable fact. I dedicate this article to my ‘angry’ attitude towards healing. I have done Masters in Business Management with over 13 years of experience in Investment Banking, which I had to quit because of my condition. I am fond of long-distance running (to which I will get back soon) with leisure interests like playing table tennis and volunteering projects.
That evening walk still hounds me when I experienced a severe pain in the lumbar region. Initially, a plethora of clinic-aid investigations was done before the diagnosis, followed by extensive therapies like steroids, blood transfusion, plasma exchange. etc. Thirty-eight pills were a part of my daily acid tasting platter accompanied with enough food restrictions, when regular episodes of diarrhea and body pain were claiming rights over me, signaling something unpleasant was around the corner.
In 2016, I was diagnosed with multiple rare health conditions like Isaac Syndrome (a diverse disorder as a result of muscular hyperactivity), Membranous Glomerulonephritis (a slowly progressive disease of the kidney), Lymes (a bacterial infection that can be spread to humans by infected ticks) and Glaucoma (an eye conditions that damage the optic nerve often caused by high pressure).
Bear Bryant (the late American football coach) once said: “In a crisis don’t hide behind anything or anybody. They’re going to find you anyway.” Therefore, I took the challenge of trying to break-free by shifting the doctrine of focus towards positivity, as conquering tough situations is hard, but isn’t just physical. This struggle has seen me grow as an individual as I denied being a glove puppet instead, flaunt commitment towards regaining the lost throne of wellness and reflect what shining-armors did differently to emerge from unexpected situations.
Though this journey has been a sketch of mixed-bag with an 180° transformation in my cultural and socio-eco state, food habits, financial and health repute, but I agree to have come a long way from being bed-ridden in 2016 towards independence... To all the ones who are battling rare conditions, don’t lose heart or hope.
The following helped me cope with my condition, hope they help you as well:
1) Always remember that rare health conditions need extra sacrifices, measures and implementation capabilities.
2) The trinity between the crisis, sufferer, and the treatment is in a dangerous Bermuda triangle until we get to the core in finding the reason for the chaos for amendment purposes.
3) Our brain needs utmost attention when manmade crisis manifests. Therefore, I kept negativity far away from reach as there is enough emotional baggage we carry during any crisis.
4) Insurance support system for expensive treatments was a saviour.
5) Sports Medicine: A specialisation, which amalgamates both the medical field and fitness. I decided to play table tennis as a therapy, which helped by constantly pushing me to new limits. Every shot played took me closer to feel a notch healthier. To my surprise even my metabolic graph and sugar levels improved.
6) The art of spirituality assures a lot.
7) Adding humour to lifecan be transformational. I still credit cartoons for a dopamine experience on a tough day. I felt calmer even in tensed moments with an uptrend in social activities, surprisingly my digestive tracks showed signs of health with doctors confirming it to be a function of reduced stress levels and flow of happy hormones. I even experienced a downturn in body pain without popping extra pain killers as laughter produces natural body anesthesia.
8) A holistic approach towards healing can be a game-changer. For me daily routine of staying close to greens, yoga, meditation, Ayurveda, homeopathy, naturopathy, being cautious of body postures, wearing loose clothes, practicing a hobby were to key to healing.
To sum it up, in my experience, it was more of mental stability than the physical support system. A Rare Disease (RD) has been identified, as that which affects fewer people across a broad range of possible disorders. According to the World Health Organization (WHO), the number of people affected with (RD) is less than 5 per 10,000.
In India, it’s back-breaking to crack the code of conduct with as dense a population of more than 138 crores which even increases the frequency of (RD) when compared to the rest of the world.
Mahatma Gandhi once said “You must be the change you wish to see in the world.” This is not about the diagnosis or medicines, but coming together for a cause as a voice taking ownership to infuse awareness and remind ourselves that a patient’s journey begins much before diagnosis. I’ve fought back hard to be where I am with a ‘go get it attitude’.