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Dear World: I Don't Look Like Your Definition of 'Sick,' and I'm Not Sorry

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If I had a dollar for every time I heard “but you don’t look sick!,” I’d be a multimillionaire living somewhere where the weather is warm year round, the beaches are white sand and snow does not exist. Seeing as when I look out my window, all I see is snow, clearly I only get told that I don’t look sick, without the benefit of that dollar.

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

Please, world, define looking “sick” for me. Do you want me to have dirty, stringy hair, pungent body odor and sickly, gray-colored skin that would’ve made Skelator jealous? Or maybe you expect me to be contorted in pain, dressed in pajamas and screaming at the top of my lungs in the middle of the grocery store?

Let me tell you a secret: I don’t want to “look sick,” whatever that is. I want to look like me. If I just can’t wash or style my hair, I wear a wig. Yeah, that’s right. I pop a wig on my head, and call it a day. You thought it was just a fashion choice, and had no idea that unwashed hair was under there, did you? If I just can’t stand the feeling of my dress clothes against my skin, I wear brushed fleece-lined leggings underneath. Tricked you again, world. If I can’t handle the thought of putting on a full face of makeup, I slap on an obnoxiously bold lip color. It distracts the eye from the bags underneath my eyes, my sallow skin and the exhaustion living in the creases of my face. Why do I do these things? I do these things because it pleases me. You see, world, I don’t exist solely to please you.

If you could see beneath my skin, you’d see a body at war with itself. You’d see hypermobile Ehlers-Danlos syndrome ravaging my joints, tendons and ligaments. You’d see my muscles cramped into knots thanks to fibromyalgia. You’d see fibrous trigger points due to myofascial pain syndrome. If you look deeper, you’d see the scars and missing chunks of flesh from battling years of adhesions from endometriosis. You’d see the changes that years of physical pain have wrought in my brain. You know world, I just don’t want you to see me this way.

I want you to see me for who I am. I want you to see the woman who is fighting an unwanted war against her own body. I want you to see the woman who empathizes with others when they’re feeling unwell. I want you to see the writer that spreads awareness about chronic illness. I want you to see me, without scrutinizing my body in an attempt to see any trace of “looking sick.” 

I’m not sorry, world, for failing to fit your definition of looking “sick enough,” because there is no one way that any of us look – yet in my community, we all have our own illnesses and challenges. We generally don’t want you to see us and think that the zombie apocalypse has come – though that’s how a good many of us feel. We all individually make the decision to look the way that is most pleasing to us while working within our individual limitations. This does not invalidate our challenges or illnesses.

World, please eliminate all variations of “you don’t look sick” from your vocabulary. I already feel sick enough – I don’t want to have to strive to fall within the boundaries of your undefined category of “looking sick” on top of it too.

Is just looking like me too much to ask? 

Getty Image by OcusFocus

Originally published: February 27, 2018
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