You Don't See the Worst Days of My Illness Because I Hide Them From You


When you see me I’m put together. My makeup is done, my hair taken care of. I’ve learned all of the little tricks to look the most presentable with the littlest effort. I’ve learned all of the little tricks to act normal despite an abnormal illness. I’ll smile, even if I’m in pain. I’ll sit quietly while my body yells at me. I do this to fit in. I do this to feel normal. I do this so others don’t have to focus on an illness they don’t know how to respond to. I do this so that maybe, every once in a while, I might get to seem like I’m not sick.

You haven’t seen my worst days. Because I hide them from you. My husband sees them, my mom sees them. But the nature of my illness is that it asks to be hidden. The last thing your body wants on a bad flare day is to be somewhere that isn’t home; to feel the need to force a smile or try to look presentable. So I hide. Tucked in my little apartment, staring at the ever-familiar walls.

There are few places I will go on a bad day, fewer still on a terrible day. They need to be places I feel absolutely safe in. Places where I don’t have to explain myself. I don’t do this because I’m ashamed of my reality, I do this because I need protection when I’m most vulnerable. But in the end, it lends significantly to people’s misconceptions about the severity of my illness.

You’ve never seen me pass out, but that doesn’t mean it doesn’t happen. You’ve never seen me out of breath from taking a shower, but that doesn’t mean it doesn’t happen. You’ve likely never watched my hands shake or my face turn grey as I gasp for air just from standing. You don’t see these things because I hide on those days. But I promise you that those days exist.

I say all of this because it’s easy to judge a person’s condition by what you see when you’re with them, but you can’t rely on that. When you see me you may wonder why I can’t apply for a regular job. You may wonder why I write about chronic illness so passionately. You may think I exaggerate because I enjoy pity. But when you see me, you aren’t seeing all of me. What you see one day does not accurately depict every day.

I try to be normal because I don’t want pity; I don’t want my illness to be the center of attention. I write because I want people to understand something that is so naturally hidden. I want them to know what happens when they don’t see me so that they can understand what my life is like. Not just because I want them to understand me, but because I want them to understand others like me. I write because I want people to think twice before making assumptions based only on what they see.

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Thinkstock photo by JZhuk

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