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When the Little Things Become Big Struggles Because of Chronic Illness

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Imagine going through life thinking, breathing, eating, sleeping, walking, laughing, respected…

Then one day your head is so full of fuzz you can’t think straight, pull a sentence together or even just find that one word you’re so desperately looking for.

Breathing becomes tough, especially if you try to move. You start to see your breathing becoming labored by simple movements, like just going from bed to the sofa.

Just trying to hold a fork properly is a struggle, and eating requires fighting the nausea from the smell as your senses are so heightened. Something you enjoyed so much is an effort.

Sleeping feels like a myth. You cannot remember the last time you had an hour, never mind a few hours. Your body becomes heavy with sleep deprivation.

You remember the days when you strutted your stuff on the dance floor for hours, shaking those hips enjoying the music. These days just standing up takes everything you have.

The greatest of joys are free and laughing is one of them. But when you lose so much and life is no longer easy, you may feel guilt in its purest form for, heaven forbid, enjoying your better days. Your career is lost, your freedom is not so easy and lastly…

Respect! People stop believing in you. You even stop believing in yourself at times. But you are strong deep inside. You are the same person you always were, your body just doesn’t work so well anymore and you need extra help. But people you know have the ability to help you instead mock you, don’t believe you and shame you when you ask for help. People who were once great friends too!

Imagine for just one moment feeling all of this and doing all you can to live a “normal” life to the fullest you can. Now imagine being judged for the way you look, move and use facilities that are there to make life easier for you. Not only judged but abused, spoken to like you’re a fake, a fraud and scrounger. All the while you are faking — faking well just so you can cope with the pain, the sleep deprivation, the difficulty moving, eating, breathing. Trying desperately to hold onto your last bit of dignity.

Now realize you’re disabled. When did “disabled” become such a filthy word?

Why should you feel guilt for using the things you need to help you live? After all you didn’t ask for your body to just stop working the way it always did, or to be born this way, or to be in any situation that makes you need help so desperately. I don’t want sympathy or for anyone to feel sorry for me. I just want people to remember I am still a person. I never thought at this early age I would have a body of someone decades older. I don’t want to feel guilty about enjoying the better days, even though they are still a struggle.

So before you speak in the future, just take that one moment to think. What if that was me? Why do I feel the need to make fun or not assist?

I hope empathy is not something of the past. This could happen to you at anytime in the future if it hasn’t already. Remember that disability comes in many forms and just be kind!

Getty image by Ocus Focus.

Originally published: February 21, 2019
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