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"Hey, I'm Flexible!"

Stories from an actress
with an Invisible Disability

Ehlers-Danos Syndrome - Hypermobility Type

www.EDNF.org

Why I dislike the word "sick"

5/16/2013

3 Comments

 
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This is all new to me, so I look for insight wherever I can find it. I'm a reader, so of course, I head for books! Wonderful, wonderful books!

When I look to books for inspiration in living my life with this new awareness of what my body can and cannot do, I find titles like these:
Being Sick Well: Joyful Living Despite Chronic Illness
Being Well (Even When You're Sick)
Doing Well at Being Sick: Living with Chronic and Acute Illness
How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers

There is nothing wrong with the content of these books - most are helpful. But I have trouble with the word "sick".

People with chronic pain/fatigue syndromes often use the words "sick" or "ill". But the word "sick" bothers me. I don't feel sick. I have a genetic collagen defect - the "glue" that is supposed to hold my body together is less Super Glue and more that paste glue you ate in 1st grade (you did, didn't you??). Because my bones often subluxate ("sublux" is when they shift out of joint but shift right back in again, unlike a dislocation where they are really out and stay there a while - only my knee and some little bones in my feet have dislocated, as far as I know), and because I have muscles desperately trying to do what my joints, tendons and ligaments cannot do, I have chronic pain + fatigue. Sometimes I don't even notice it's there because it's there all the time - until I get a pain burst: from a pull, or a microtear from a sublux, or fall because my coordination is a less-than-stellar (that's called "lack of proprioception" - our joints are loose so we're not sure where they are in space). That's not "sick" to me. That is "disabled".

"Sick" is when I get the flu. "Sick" goes away. "Disabled" means my abilities have changed - they have become more limited. "Disabled" does not go away. Saying I am "disabled" doesn't bother me. Saying I'm "sick" or "ill" does. It just doesn't feel right.

I love words and their usage, and these words bother me in this context. I don't really know why this is. Maybe I haven't been living it long enough to know yet. Or maybe I'm just cranky ;)

Don't worry, though - I'm not gonna get upset or or judgie if you use those words. (However, I will still judge you on "their", "they're", and "there"!)

3 Comments
Zyp link
7/13/2013 09:40:25 am

I totally agree! I've finally broken down and started using the words sick and Ill, but I know I'm not. As I said to a doctor once, I'm the healthiest "sick" person ever. I wasn't sure what bothered me so much about these words, but you've identified it clearly:
We don't ever get well, we don't heal, we don't get better, only worse.

Reply
Cyrilla
7/13/2013 11:06:49 am

Zyp, can I ask why you've decided to use "sick" instead of "disabled"? Do you feel there is more of a stigma attached to that word? Mostly, I just smile and say "I've got some medical issues", because my wrist and ankle braces make me look more "injured" than "disabled". I'm not really happy with any of the words at our disposal.

Reply
Zyp link
7/15/2013 08:46:05 am

Disabled just seems like too all-encompassing and absolute. I'm actually "partially" disabled, but there's no word for that - perhaps semi-abled or semi-disabled? What I really feel like is semi-functional.

I know I'm not “ill” or “sick” either, but I think it gives people a better idea of what my situation is. Chronic illness does imply a damaging health condition that doesn't improve. Bad collagen is constantly being produced anew, so I liken that to other illnesses like Fibro & CFS where the body isn't functioning as it should.




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    Author: 
    Cyrilla Baer

    I was diagnosed in February of 2012 with 
    EDS - HT, which is a genetic connective tissue disorder (it's why I can bend my elbows backwards!) I've kept it under wraps, but I'm out of the medical closet now.

    EDS is caused by the body's inability to make collagen correctly. Collagen is in all connective tissue and connective tissue is part of every organ and vessel in your body. While your tendons and ligaments are like rubber bands, mine are more like taffy.

    For more info, please see my post "30 Things You May Not Know About My Invisible Illness", or visit EDNF.org or CEDSA.org. And tho it's a little dated (we try not to call it Joint Hypermobility Syndrome anymore), this is a description by a doctor putting it in  layman's terms.

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