LibraryScenariosWhy invisible rare diseases create unique identity challenges
Scenario

Why invisible rare diseases create unique identity challenges

My rare condition is invisible and I've gotten so good at managing it that people forget I'm sick, but the constant performance of wellness is exhausting me.

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More people experience this than they realize.

What we've seen

The success of adaptation creates its own burden when others can no longer see or accommodate the underlying struggle.

Ideas that help explain it
Worth thinking about

“Where Are You with Rare and orphan conditions?”

If this sounds familiar, the Library can help you find the bigger picture.