a woman looking up from a piece of paper looking overwhelmed and confused

You Describe Air, I'll Describe Narcolepsy

Writing is my saving grace. It teaches me to structure my thoughts and enables me to effectively express myself in order to truly be seen through means of the written word.

However, following countless attempts of trying to describe narcolepsy to those who have never experienced it, I admit that it seems like it is a never-ending struggle. No words ever seem to do its singularity justice.

It's like asking someone to describe air.

Narcolepsy is complex

Narcolepsy is such a complex condition on its own, and add the fact that it affects every single individual differently...and you surely have an almost impossible task before you.

Firstly, every experience is dependent on a wide variety of factors such as genetics, location, life dynamics, how your body handles the affliction, general health, mental state, age at diagnosis, etc...the list goes on.

How do I describe something you have never felt?

How can any word composition, no matter how carefully selected, give true justice to a condition that yields an incalculable number of results?

It’s a hard feat to describe something people have never felt, let alone successfully foster an emotional connection to a world they have never known.

Narcolepsy isn’t a part of my life...it is my life.

How do I describe this lack of control?

How can I describe wanting to laugh or scream in terror yet have no control when my body decides it simply wants to freeze my vocal cords so no sound can be released? My body tenses and weakens against my will. My eyes close on their own, and absolutely nothing I do can bring regularity back until my body itself wills it to.

I feel my chest inflate with a foreign heat and rigidity that I cannot comprehend...my body begs to release emotion I am trying to externalize...but all I can feel is the trembling of my cheeks as I now also fight to keep my eyes open.

How do I describe my academic and professional challenges?

How do I explain struggling the 2 years in UK college? Forcing myself to go despite being tormented every single day. Battling for 3 years of university against my desperate need to close my eyes, trying miserably just to graduate.

Only to enter the corporate world, and from the very first day, have every single person question your capabilities, your professionalism, to the point that you begin to question it yourself?

How do I explain any of this?

How do I explain waking up countless nights to a dark shadow hovering over you? To the sound of your windows breaking and footsteps drawing nearer? To the face of someone you buried a long time ago?

Living every minute of your life as if your alarm had just gone off and it's 5 AM.

Taking numerous pills every day that, to (hopefully) help you function, pulverize every other part of you.

And all of the above doesn’t even begin to cover it.

Not everyone will understand

Invisible to the naked eye, narcolepsy is an illness that is frequently undermined and ridiculed. Many times, unfortunately, by those closest to us.

We have to accept that not everyone will understand, or have the capability to accept us as we are. And that’s OK.

Those who matter always will.

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