LibraryScenariosWhen chronic rare disease patients reject the inspiration narrative
Scenario

When chronic rare disease patients reject the inspiration narrative

I've had this rare condition for fifteen years and I'm tired of being brave and inspiring—I just want to complain sometimes without someone telling me how strong I am.

Dipa
Online
The coach is replying

More people experience this than they realize.

What we've seen

The social expectation to transform suffering into inspiration denies the legitimacy of ordinary human responses to ongoing hardship.

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.