16 Truths People Wish Others Understood About Rare Disease


“You have what?

“But you don’t look sick?”

“I think maybe you’re exaggerating.”

Living with a rare diagnosis brings with it a unique set of challenges. Research can be sparse, support groups can be hard to find, perplexed doctors fill your everyday life and invisible symptoms make it difficult to portray what you’re actually going through.

At The Mighty, we want to help you share your stories — to raise awareness, to help you find people going through similar situations and to remind others that everyone has a something. We asked our Facebook readers what they wish the world understood about their (or a loved one’s) rare disease. Here’s what you had to say:

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Susan Mullaney Anderson
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Brianna Wyckoff
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Jen Eastwood
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Carissa Barrows
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Melissa Schlemmer
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Amy Holler-Bender
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Alexandria Hoehl
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Jennifer Shelton
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Lacey Smith
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Audrey Rau Rockman
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Julie Abernathy Domian
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Amy Murch
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Sabrina Ricks
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Kim Wayne
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Jennifer Bergk
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Destiny Lomonte

Are you living with a rare disease? What do you wish others understood about your condition? Let us know in the comments below.

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