The Ways You Can See Hidden Disability
Published: 2017-01-26 - Updated: 2021-04-16
Author: Caylee Shea | Contact: Disabled World (www.disabled-world.com)
Synopsis: Caylee Shea writes on the trials and tribulations of having a hidden illness or invisible disability. People with hidden illness are stuck in a limbo between facing debilitating symptoms and looking like a healthy person. You can not see the war raging in my immune system. You can not see the lesions that speckle my brain and spine. I probably just looked like a healthy 23 year old girl that moves slowly.
The majority of chronic illnesses are hidden - Meaning you can not see any physical evidence that there is any disability. There is no cane, no bandages, no helmets, no braces and their head is not shaved bald from chemo. People with hidden illness are stuck in a limbo between facing debilitating symptoms and looking like a healthy person.
In Other News:
Here is one moment I spent in that limbo...
"I pulled up to Walmart, already stressing about the task ahead of me. As my second foot awkwardly found the asphalt outside my car door, my fatigue weighed heavy on me. My fatigue feels like it is pulling me to the ground.
It pulls so hard I feel like I could sink into the ground and become part of the asphalt and dirt below my feet.
I fight the urge to crawl back into the car and pass out in my driver's seat. I have spent one too many days sleeping in the driver's seat of my car. I always lean the seat all the way back, not necessarily for comfort, but because I am ashamed that I am the weirdo sleeping in my car at your local grocery store.
No, I am not homeless.
No, I am not lost.
The drive here just wiped me out so much that I need to lay here and focus my energy on breathing. So, I lean back and tell myself "people will just think I am waiting for someone that is shopping right now". I take on my usual coping method- denial and blocking out the rest of the world.
I fight the urge to crawl back in because I know all-too-well that I will not get food if I don't go shopping now. I have been avoiding this shopping trip for much too long and am tired of searching for the last remnants of food left in the back of my cupboards.
Woman half hidden behind tree with superimposed text - Why can't I feel as healthy as I look? Why can't I look as sick as I feel?
So I pull the last bit of strength I have and lock the car door. As I gingerly place my purse on my shoulder, my mind wanders to how heavy my purse becomes at these moments. When these hidden illnesses of mine weigh on my body, the lightest weight becomes amplified. Even the keys in my hand feel like a pound. I quickly drop the keys into my purse before my hand can spasm and throw them to the ground. I couldn't imagine having to pick something off the ground right now. Healthier people do not understand how just picking something off the ground can be extremely painful and I will be panting by the time I finally get that tiny object off the ground.
I take a deep breath and begin my slow walking to the store front. I feel so proud. I remind myself that I got this. And, more importantly, I remind myself that I will have some ripe, fresh fruit very soon... And then the dreaded happens. As I gently sit myself down on the first electric cart I can find I glance up into angry eyes. The woman standing in front of me glances down at the cart I just claimed as my own for the next hour and then she quickly glances behind me at my old Jeep... parked in the Handicapped Spot.
I feel my face flush a bright red as her angry eyes and pinched lips focus back on me. She lets out a disgusted "Ughhhh" noise.
I realize right in that moment that I look healthy. You can not see the war raging in my immune system. You can not see the lesions that speckle my brain and spine. I realize that when I was fighting this battle just to reach the chair I sit now, I probably just looked like a healthy 23 year old girl that moved slowly. This woman most likely thought my slow moving had to do with laziness. Lazy, distracted millennial, right??
In that moment my heart dropped to the floor of my gut and I felt every ounce of my pride pop and deflate like a discarded balloon.
I inhaled sharply from the emotional pain that just gut-punched me. My mind went blank.
Before I could explain to her that I am sick she was walking out the door in a huff. I sat in that chair wondering why my presence always upsets others? Why can't I feel as healthy as I look? Why can't I look as sick as I feel?"
Are there ways to see a hidden illness?
Why can't we feel as healthy as we look?
Why can't we look as sick as we feel?
Maybe there are visual signs that someone has a chronic illness?
So what does someone with a hidden illness 'look' like??
Let's Count the Ways
Someone that parks in the handicap spot and, instead of running in and using the spot like it is "10 minute parking", they slowly walk inside and they avoid your eye contact from the embarrassment and fear of your judgment.
- Someone that tells you with pride that they managed to do the laundry and cook a meal today!
- Someone that circles the parking lot 5 times, because an extra 20 feet of walking will affect their entire day
- Someone that cancels coming to your party because "something came up"... (but really they are just home resting and don't want to admit how awful they feel)
- Someone that doesn't have a medical degree but the majority of the websites bookmarked on their computer are to medical websites.
- Someone that can pronounce more drugs than your pharmacist.
- Someone with more pajamas and yoga pants than the average person.
- Someone who actually feels a little offended when you say "But you look so good"
- Someone whose night of taking 'shots and doing drugs' does not provide any street cred.
- Someone who is always searching for a new way to style their hair with the absolute least effort.
- Someone who is more interested in what medical insurance their fiance has then his/her income level.
Do you know of more ways that hidden illness is visible?
About the Author
Caylee Shea is a columnist for Disabled World, Caylee raises awareness for people with chronic illness and disabilities. Her purpose is to bring us all together- all of us delightful weirdos and proud gimps! Whatever your level of disability - especially if it is a hidden disability - life can be very lonely. Through her hardships, Caylee has learned to never give up and to enjoy the little things in life.
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Cite Page: Journal: Disabled World. Language: English (U.S.). Author: Caylee Shea. Electronic Publication Date: 2017-01-26 - Revised: 2021-04-16. Title: The Ways You Can See Hidden Disability, Source: <a href=https://www.disabled-world.com/disability/blogs/hidden-ways.php>The Ways You Can See Hidden Disability</a>. Retrieved 2021-08-02, from https://www.disabled-world.com/disability/blogs/hidden-ways.php - Reference: DW#322-12654.