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When People Judge My Illness Based on How I Look

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The way chronic illness affects my body image and complicates beauty is a strange thing. I may indeed be sick, or not sick, on any given day. Chronic conditions can be lifelong or just last a really long time. It is what the word “chronic” means!

I’m not just “sick,” even though my illnesses can take over and feel all-encompassing. I have a special relationship, friends, hobbies and even a job. But I am not my illnesses. They are just a part of me. Yet it seems there are absurd standards and perceptions about what I “should” look like because I am sick.

This only makes my already-complicated relationship with my body more complicated. I’ve been some level of sick since my preteen years. I don’t ever really feel well, and it’s been so long that I’m not sure I’d know what “well” would feel like. And it’s only getting worse over time with the addition of malignant multiple sclerosis. I’ve stopped trying to hide my health issues, but I’m having way too many experiences where what I look like affects how people perceive not just me, but the existence and severity of my illnesses.

These mixed-up mis-perceptions complicate my tentative sense of self and the strange relationship I have with my body. If I dress nicely and leave home looking put-together, I must be feeling better. Right? If I don’t dress nicely, I’ve let myself go and given up. Surely. Should I dress sloppy to match how I feel? Should my shirt scream out my pain level? So many things go through my mind when someone tells me I look good with a surprised tone. What am I supposed to do? Smile and say thanks? Correct them? Tell them I actually feel like crap and am barely standing? So awkward!

Compliments are tricky because it’s not socially acceptable to correct them. And then there’s the practicalities of everyday life. People think I’m overdramatic or fake when I have physical weakness or fainting episodes just from the sheer exhaustion of existing. How do I set up boundaries and assert myself when there is no evidence of what is going on inside me? Would you treat me the same if I was in a wheelchair or always used a cane? Would you? Can I wear a cute dress when I feel horrible without calling everything into question?

Why not just believe I’m being honest about how I’m doing, regardless of what you see on the outside? It’s hard not to be angry at my body when there is no visible reason for all this dysfunction. But I’m tired of being judged. I’m going to go out of my way to treat myself and others gently, since you really can’t judge a book by the cover.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? Check out our Submit a Story page for more about our submission guidelines.

Originally published: May 18, 2016
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