LibraryScenariosWhen families struggle with rare disease caregiving balance
Scenario

When families struggle with rare disease caregiving balance

My brother has a rare neurological condition and our whole family revolves around his care, but some of us are burning out while others think we're not doing enough, and we can't seem to have an honest conversation about the resentment and exhaustion without someone feeling like a terrible person.

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More people experience this than they realize.

What we've seen

Love becomes complicated when sacrifice is distributed unequally and guilt prevents honest conversation.

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.