LibraryScenariosWhen rare disease treatment schedules overtake personal identity
Scenario

When rare disease treatment schedules overtake personal identity

My rare blood disorder requires monthly transfusions and I've started declining invitations automatically because planning around medical schedules makes me feel like a patient rather than a person.

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More people experience this than they realize.

What we've seen

The rigid requirements of medical maintenance gradually reorganize life around illness until the medical identity subsumes the personal one.

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.