My daughter was diagnosed with a rare metabolic disorder and my husband and I are handling the uncertainty completely differently — he researches obsessively while I can barely look at the medical papers, and we're not talking about how terrified we both are that there might not be any real treatment options.
More people experience this than they realize.
Two people are drowning separately in the same overwhelming reality, unable to bridge their different coping mechanisms.
“Where Are You with Rare and orphan conditions?”
If this sounds familiar, the Library can help you find the bigger picture.