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Why I Don't Consider My Ehlers-Danlos Syndrome to Be an 'Invisible Illness'

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I don’t recognize parts of myself nowadays. I don’t belong in the body I live in anymore. Just like you wouldn’t belong in a house that neglected you, I don’t feel like I belong in my own skin.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Ehlers-Danlos syndrome is known as an invisible illness. You generally can’t see the manifestations of it. However, I don’t agree. You’re just not looking close enough.

It’s hard to look past things that have changed and the things you’re not used to. When I look in the mirror, I see a tube coming out of my stomach, a tube going into my intestines and a couple of lines on the side of my arm. I see around 25 percent less of me than there was last year, and I was never in a position where I needed to lose weight. I see bruises from botched injections and scars from too many surgeries. I see the machines I can never get more than a couple feet from. I see the bags under my eyes from the exhaustion of sleepless, hospital nights.

I also struggle with the fact that things are ever changing. Changes in a treatment plan can cause me to gain or lose obscene amounts of weight in a matter of weeks, causing my wardrobe to have a range of sizes. When I just about get used to a tube, a new one is added or taken away or changed. It’s a never ending guessing game of how my appearance will develop next.

Beneath my outer appearance, I see a body that is oh-so determined to shut down. Joints that won’t stay in the right place for more than a couple hours, a gastro-intestinal tract that has failed at it’s one purpose, and an autonomic nervous system that can’t get its act together to allow me to stand up.

I don’t want my illness to get in the way of my self-image. My illness has taken so much from me, it’s not going to define my self-worth. When I look in the mirror, I see a body that’s waved at hell and come running straight back. I see scars that tell incredible and sometimes funny (in retrospect) stories. I see a body that’s not giving up over just anything.

On days I can’t see the positives of myself physically, I try to look at myself a bit differently. I see a girl who has wiped her tears too many times but has found a way to stop crying. I see a girl who laughs in the face of uncertainty. I see a girl who saw a challenge, got scared of it, but kicked its ass anyway. I see that you’re not your tubes or scars or weight. I see that you are not just what’s happened to you, you’re how you approached it. I see that there’s a future in your eyes, even though you’d rather keep my eyes closed sometimes.

I detest the ways you can physically see my illness manifest itself (try dress shopping with tubes!), but I am the way I am as a result of my suffering.

I’m not letting it get to me, and I’m not going anywhere.

Thinkstock Image By: Ralf Nau

Originally published: March 23, 2017
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