LibraryScenariosWhy rare disease families reject others' pity
Scenario

Why rare disease families reject others' pity

My daughter's rare developmental disorder means she'll never live independently but she's so happy and loving that I feel guilty when people offer sympathy like her life is tragic.

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More people experience this than they realize.

What we've seen

The assumption that difference equals suffering invalidates the genuine joy and meaning found within lives that don't conform to typical expectations.

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.