I've become obsessed with documenting every detail of my son's rare condition because I feel like if I don't record it all, his suffering won't have mattered when he's gone.
More people experience this than they realize.
The fear that unique suffering might disappear without trace drives compulsive recording as a desperate bid for significance and remembrance.
“Where Are You with Rare and orphan conditions?”
If this sounds familiar, the Library can help you find the bigger picture.