LibraryScenariosHow late rare disease diagnoses complicate the relief of answers
Scenario

How late rare disease diagnoses complicate the relief of answers

I finally got diagnosed with a rare autoimmune condition after ten years of being told my symptoms were stress and I'm angrier about the lost time than relieved about the answer.

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More people experience this than they realize.

What we've seen

The validation of finally being believed is overshadowed by grief for the years spent doubting one's own reality and receiving inappropriate treatment.

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.