Sukanya who faces Rare Conditions called Graves’ Disease and Euthyroid Eye Disease (TED) writes about her life’s journey.
In life we don’t get enough scope for an honest confession, especially when it is relating to some sensitive topics like our disabilities, but fortunately and thankfully I got.
I just want to tell my story not so that I get glory, but so that others may know Hope. It all started with a major panic attack with unbearable hand tremors in a bus while returning from my college. But that time, I did not have any idea at all, that it was just the beginning of a long-time and lifelong battle against my body and most importantly against my mind, all alone. I never knew that what ‘panic attacks’ are till then, within few years it became the curse, the nightmare for me. Then for five long years I met innumerable physicians and ophthalmologists, who wrongly diagnosed every time, one after another with those painful symptoms and massive weight loss. I have spent too much time and money, on wrong diagnosis and wrong treatment. Unfortunately, not one of them recommended a simple thyroid test. I had to ask for it repeatedly and finally when we did the tests, the results ended up with Euthyroid Eye Disease (TED) and then with Graves’- two autoimmune diseases, simultaneously, & bound with lots of limitations. I was drained and fully exhausted.
The new found results did not matter much to anyone, as there is not any proper guideline in treating autoimmune patients. Guidelines for proper maintenance were absent leave alone a Cure. I just used to feel like they are trying to assume some hypotheses and then trying to relate my symptoms with that hypothesis and trying to prove it true. It was very ridiculous indeed. Moreover, I went into remission without any proper guidance and medication. I never knew how a disease can turn a 19-years old energetic, happy young girl to an anxious, weird, always stressed, gloomy, rude person within few months. I was trying to survive in a body that wanted to destroy me.
It is not easy trying to survive when you are physically destructing from the inside out. I lived so many years remaining undiagnosed. I continued concentrating on my education and completed my Masters with a gold medal. I even started my research. But, all the while I was going through a very tough time to fight with the enemy. The fight was tough when the enemy is yes, your own immune system. A system which is supposed to be protecting you was attacking from within. I was slowly getting incapacitated from each and every aspect. These two tricky diseases together compelled to leave my energetic and joyful life. Now it feels like I have just been surviving for these eight long years almost.
During this time, I learnt lessons from what life has given me, one by one.
First is, not to accept when some say: it’s all in your head”. It would be better if people do not give this bit of advice at all. What I still hear, don’t settle on those, I have fought for my diagnosis- that unrelenting nausea, severe & crippling anxiety, bloating, heat and cold intolerance, chronic dysentery, difficulty in swallowing food, tremors, palpitation, huge weight loss (5.51 lbs in a week!!) tremendous pain, redness and inflammation in eye, etc. – not a single thing to ignore. You have to fight alone for your own diagnosis. Of course it came from my prolonged stress and mental pressure. I really feel pity for those people who consider their good health as “taken for granted”. I did not get any advice from medical practitioners ever so I have done my very own research on nutrition & diet and almost died, but so what? Still we have to accept it because even simplest advice and acknowledgement are not available from physicians. I think this experience goes with every rare disease warrior. But trust me things will get better on someday, until then just keep faith. Your illness does not define you. Your strength and courage does. Every single day we have to fight to survive. But only surviving is not the purpose— the purpose is living!
Second, I have learned I should not explain about my mental crisis to anyone as that mental instability is not acceptable and no one wants broken things. Yes, I know it is woeful but very true! (** Here I suggest that you take medical help, not just go by the well wishers around – one needs to understand and accept when a therapy is needed) The people surrounding us, most of them confuse ‘empathy’ with ‘sympathy’. We just want a heart to listen, we open up, and at times it helps for the moment. For me the mental trauma became intolerable after my Mom’s demise. Graves’ took my long, beautiful hair, my tender skin, my ability to think, to concentrate, disfigured my almond-shaped eye, it will never return you that spark that has made you “YOU”, but you have to start over, no other option. It was liberating and empowering to not dwell over things that I couldn’t control and to be happy with what I have, than mulling over what I lost and what I knew I would be losing again…and again! I have lost everything- my career, my dreams, my passion, the love of my life, my strength but it will never be able to take my hope away. I would love to travel a lot but now, can’t pluck up that courage and spirit. Yes, sometimes, we are full of pain, mental agony, devoid of hope, most of the time alone in our journey, no, for us definitely it will not pass, we just get used to it- and then, despite of all these, we have to rise again. Loneliness is the hardest part of this journey for me, mostly during those confined condition with 16-17 panic attacks roughly a day.
FIGHT BACK: It doesn’t matter how deep your fall is. What matters is the intensity of your will, desperation and determination to bounce back up and out of the lowest possible lows. Acceptance is all about for a chronic illness warrior, not only me. I was told again & again that Graves’ is very rare among Indian and in Asian too, so not enough clinical data are there, I have accepted. There are no medicine and cure, I have accepted. Only cosmetic surgery available for eye, that too got cancelled, even I have accepted that. At some time, I wished that my family members would understand but no, I have also accepted that, in fact, I am bound to accept. I know there are many like me who are locked in room for months after months still can stand up with courage, hope. Yes, of course, it is very difficult to accept the some permanent changes it has left, the changes in chemical environment in brain due to hyperthyroidism, make me to think so many times, then I have to fight against my own mind, my soul, which has two states, it is dreadful than fighting against the body but it only matters how you can manage this scariness without sharing it to others as our society is biased with the mindset that being negative sometimes means being mentally weak, so that immense strength is needed to come out of this is often becomes the deepest pain, similarly our deepest pain becomes our greatest strength. I know there are many like me; I’m just trying to find a way out!
The way night creeps slowly but surely into a beautiful sunny morning, after every chilly winter, comes spring with its gorgeous bloom. Life has taught me to “hope”- to always look forward to good times. And believe me, they do come. Yes, finally, after this arduous and painful journey of eight years from 2012, I am recently officially declared to be in full “remission”, means no Graves’ activity in my body and eye, but that doesn’t mean I don’t have to endure pain, but believe me, you will be able to bear it any way, like I can tolerate that stinging pain even in eye and work on screen for a fairly long time for me at least. I have beautifully recovered after this painful battle. I am really very grateful to those two to three friends who have never left me even I was the most difficult and nagging person to stay with, few of my teachers, few physicians and therapists who have helped me. This path is always difficult but we will always have something to appreciate. We just need to help and understand each other—“Nothing is more important than empathy for another human being’s suffering. Not a career, Not wealth, Not intelligence, Certainly, not status. We have to feel for one another if we’re going to survive with dignity.”- Audrey Hepburn-