LibraryScenariosWhen rare diseases force you to live in perpetual uncertainty
Scenario

When rare diseases force you to live in perpetual uncertainty

My rare autoimmune condition flares unpredictably and I've stopped making plans more than a week out because I'm tired of disappointing people when my body betrays me.

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More people experience this than they realize.

What we've seen

The unpredictable nature of illness erodes the social contract of reliability, leading to progressive withdrawal from normal life rhythms.

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.