"The Chronic Illness Experience" BOOK CHAT
Re the book also ran's doc suggested - all I can say, AR, is that you have a rockin' doc who UNDERSTANDS. I found a cc on Amazon, used, for about $15, and later saw one for (sigh) about $2 at Goodwill. If you've got a store near you, check it out. Ours is GREAT for books!
I've always been a bit leery of "self help" books. Often too "preach-y perfect." But I started reading this one yesterday and have barely been able to put it down. In fact, woke up at 3 a.m. and ended up reading for another hour. Its good. Really good. THe author has an "invisible illness" and she quotes many others - several with lupus - throughout the book. It is written from the heart and the head.
I know we all don't have it yet, so I'm going to post a couple quotes that stuck out in the introduction. A discussion starting point, perhaps?
From page xvi of the introduction:
"Most of us prefer to pass as healthy, living as normally and fully as we can under the circumstances. We hesitate to inflict our private anxieties on a health-conscious world that sees illness as a temporary abnormality and has little understanding of chronicity."
And a couple pages later - I thought of Ron, Lars and the other men on the forum:
"Passing as healthy is apparently a more urgent matter for men than for women."
Do you try to "pass?" Does that increase or decrease frustration and/or stress for you? What happens to you when you're "outed" as having a chronic condition?