Paula Kamen, author of All In My Head, talks about the value of education in coping with chronic illness in an excellent editorial in the New York Times, Leaving the Rabbit Hole. This passage, in particular, spoke to me:
The worst thing, to me, about having a non-stop multi-year headache isn’t necessarily the pain. Or the way it tends to disrupt intimate relationships, empty all financial reserves, and sabotage the best-laid career plans. It’s not even the endless barrage of (albeit well-meaning) suggestions for “cures”from everyone you meet, most of which you’ve already tried anyway (except for the colon cleansing and the Jews for Jesus conversion).
No, it’s the emotional suffering—from all the guilt and the shame, of patients like me thinking it’s our entire fault, and maybe all in our heads.