I read Women, Work and Autoimmune Disease by Rosalind Joffe and Joan Friedlander a few months back, but for some reason my review on Amazon never showed up, and I didn’t think to keep a copy for myself. It seems to finally be there now, so I’ll put it here, too (slightly expanded).

This book is one the best I’ve ever found for those of us who have chronic illnesses, but want to continue working. It goes beyond the standard “coping tips” to talk bluntly about pacing yourself, searching for a job, keeping a job, negotiating with your employer for accommodations, and being self-employed. Topics like “when do I disclose a disability/illness?” are covered by authors who have extensive personal experience building their careers despite chronic illnesses.

The title does refer specifically to women, but I think the book can also be very useful for men. Likewise, there’s no reason to limit readership to people with autoimmune diseases.

I’ll be buying copies to send to some of my friends. I don’t plan to let mine out of my sight! I hope to get a copy of the accompanying workbook soon, as well.

Joffe’s blog, Working With Chronic Illness, is also good reading.

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.

She also mentions a good site for anyone who has problems with migraines, Robbins Headache Clinic.