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Submitted by PatientsEngage on 3 December 2016

Deepthi Nair, who was diagnosed with Myasthenia Gravis (MG), a rare, neuromuscular autoimmune condition that leads to varying degrees of muscle weakness, finds the ‘invisible symptoms’ of the disease causes misunderstanding among people and pain and frustration to the patient.

December 3 is celebrated as International Day for Persons with Disabilities. Last year, somewhere during this time, I had been to the Disabilities Commission to attend to a legal matter. I remember having witnessed a scene that touched me deeply. Little did I know that I too would have to go through a similar situation today…just about a year later.

I remember a young couple had entered the parking zone of the government office and were heading towards the space reserved for the disabled. As soon as they had parked the car, I saw the man get down from the driver’s seat and go to the other side to open the door for the lady. The lady, holding the arms of the man, was trying to get up slowly when suddenly a security guard emerged and started hollering at the couple for parking their car in the space reserved for the disabled. The couple did not look disabled in anyway. Even the lady, who was being assisted, looked fine. She was dressed beautifully and her limbs, arms, eyes, and all else appeared to be in order. Seeing the apparently perfect condition of the lady, some people joined the security guard in shooing off the couple from the demarcated parking zone. Do not misuse the privileges of the disabled, they seemed to be telling the couple.

The man supporting the woman, who was struggling to stand on her legs, politely informed the security that his wife was suffering from a rare autoimmune disorder which appeared invisible or indiscernible to others. The truth was his wife was too weak to walk - let alone stand on her own! The lady who thought of attempting to walk without crutches now was forced to take it out from the car, just to convince the security. But the crowd gathered there was in no mood to understand this ‘invisible disability’ and, amidst loud muttering of ‘how dare they?’ forced the couple to shift out and park their vehicle far off.

I kept wondering for a long time why those people were so rude to her.

It’s now, after a year, when I myself have been diagnosed with an invisible autoimmune disorder called Myasthenia Gravis...that I got the answer. It was a case of hasty judgement!!! That lady in the car did not look like the world thinks a ‘disabled’ person should look. She was not old (enough to be disabled due to ageing), physically affected; there was nothing glaringly and obviously wrong with her.

My condition today is no different from that lady. I can clearly sense people being uncomfortable around me because they are not able to understand from which angle am I disabled. So in a flash judgement is passed... there is nothing wrong with her, she is probably just plain lazy, wanting attention.

A similar incident happened to me in AIIMS when I was sitting in my wheelchair and waiting for my turn in the queue to meet my doctor. By the end of two hours, I was so exhausted that my spine had bent making my head reach between my knees; my eyes too had drooped, but with my half-open eyes I could see people staring at me unforgivingly. I had grown chubby with steroids, I was dressed well and apparently the youngest patient in the whole waiting hall on a wheel chair!

Seeing my condition deteriorating, my husband requested the security waiting outside the doctor’s room to kindly check when is our turn. A brief look at me and he made his judgement and catapulted us back saying there are many more 'deserving' people in the queue!

When finally we met the doctor and I came out of the room...walking wobbly holding the walls and door with my neck now totally drooped and right arm totally paralysed since my wheelchair was parked outside during my examination... I could sense those eyes that were unpardonably gnawing at me 15 minutes back…had now turned apologetic!

The same security guard, forgetting the restless crowd, came and held my hands and took me cautiously to my wheels. Putting a lot of effort, I pulled my neck back and looked up to thank him. I noticed he had become really warm and regretful. Is this because he could see my disability to walk, my body now crippled with the nerve twitching and pain, my obvious discomfort. He could now assimilate something tangible?

It was interesting to witness the reaction of the rest of the people including the elderlies, most of who even stood up and came to help me get seated on my wheelchair, appearing totally shocked to see my real state!

In the last six months, my fluctuating conditions sometimes on wheels, sometimes on crutches, sometimes almost blind with both eyelids drooped, sometimes dumb with a paralysed tongue, has made me immune to the judgements and reactions of others. If I am not in my wheelchair or using crutches no-one would guess I have any health problems. However, it is bewildering and saddening that people can be so judgmental towards those with invisible disabilities.

I try my best to no longer allow the words or actions of others dictate how my day goes. I have no control on what others think or say but I have learnt to choose the way I react and feel.

I am aware that situations like the one above are sadly all too common, and I always am in a dilemma on how to react to it. It is a shame that people aren’t always as compassionate and open as we would hope them to be.

So what do I do when someone intentionally tries to ruin my day with such an insensitive reaction or judges me for taking rest to get over the fatigue and bring back my paralysed organ back to life, which means lying on bed for a whole day or may be even days without looking sick?

I choose to rest without shame or guilt as I am not resting…I am healing. And, I choose to forgive them because their choice of being rude, misinformed, judgemental and ignorant will jolt them for life, than me for a day!