The Mighty Logo

16 Truths People Wish Others Understood About Rare Disease

The most helpful emails in health
Browse our free newsletters

“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:

raredisease2

Susan Mullaney Anderson
raredisease3

Brianna Wyckoff
raredisease4

Jen Eastwood
raredisease7

Carissa Barrows
raredisease5

Melissa Schlemmer
raredisease6

Amy Holler-Bender
raredisease8

Alexandria Hoehl
raredisease12

Jennifer Shelton
raredisease9

Lacey Smith
raredisease11

Audrey Rau Rockman
raredisease16

Julie Abernathy Domian
raredisease18

Amy Murch
raredisease10

Sabrina Ricks
raredisease14

Kim Wayne
raredisease15

Jennifer Bergk
raredisease17

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.

Want to celebrate the human spirit? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

Originally published: February 27, 2015
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home