To The Girl Who Said It Must Be Cool to be Chronically Ill


By. Julia Nizen

To the girl who said it must be cool to be chronically ill

I know you had no ill intent

You meant the good parking and special treatment

Only the perks of disability

My dear, there are no perks

I am sorry that there are four spots in front of the store that are not for you

I am sorry that I get the big stall with enough room for a wheelchair and hand bars to transfer

I’m not really sorry that I get to skip concert lines, because actually seeing at a concert is next to impossible, even with the handicap section

I am also sorry, that I happen to be a mild inconvenience in your day but imagine my reality for a moment Imagine a searing pain, pins and needles, a fire ignited in your very bones burning all at once as soon as you take a step I can only take so much

Just like I can only take so much of your ignorance

Now imagine I’ve gone from ghost to ghoul

I cannot go unnoticed

All I see is forced smiles from fearful strangers

Forced smiles and impatient eyes

Day after day doing what I can to make it look easy

I hope the stiled smile that graces my pale faces distracts you

Distracts you from the pain in my eyes

From the intricate veins that weave beneath my thin skin

Connecting like rivers that carry my chronic blood in never ending cycles

As if my body is a playground for its flood

My illness isn’t visible, You can’t see the pain that courses through my veins and takes away my legs

You can't see the way my heart fights for each chronic beat because it's too weak to work right

My body doesn’t always cooperate, I pass out when I try to stand and I can't cool down when I get too hot

But being chronically ill isn’t what you see on tv

It isn’t living in a hospital bed with wires running to and from me

Being chronically ill is living in constant pain because there is no cure

Its living in constant fear of peoples second glances and misconceptions because

I’m still self-sufficient

Being chronically ill is a roller coaster

I didn’t want to go on

Sometimes the ride is smooth

Giving me days where I can use crutches to walk around

But sometimes the ride gets rough It gives me days I can’t physically get out of bed

Trapped by a pain I cannot name and a mind so heavy there might as well be weights on my brain

My dear, chronic illness is the loopity loop on a roller coaster and it is stuck on repeat

I can’t stop this sickness that comes and never goes

I am not in control

You see, being chronically ill is like being on a roller coaster with a couple screws loose

Wondering if you’ll survive the ride and also wishing you wouldn’t

But my dear I can never forget the love that gives me life

I’ve got family and friends that see me for me

Despite my illness

Despite my pain

They see me

And maybe one day,

You will too

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Julia Nizen is an ambitious writer from Apex, NC. She is a passionate activist for the disability community and a competing slam poet. She is currently working on her Undergrad in both Psychology and Creative Writing at the University of North Carolina Wilmington. She plans to pursue work as a psychotherapist and teach college creative writing courses with a focus on poetry.