Kate Lorig, developer of the Chronic Disease Self-Management suite of programs, recently blogged about her personal experience with chronic illness and about evidence-based programs. You can read it here (opens as a PDF document).
An excerpt from the beginning:
I Have a Chronic Illness—I don’t “know” what to do—No One Gave me the Textbook
We all have too many problems and too many choices. Often this is so overwhelming that we do not do anything for fear of making of the wrong choice. We decide to just live with our diseases and symptoms.
I know this, because I was born with a genetic chronic illness and have acquired a few more along the way. In fact, as I look back, I have never been what the rest of the world calls well. I, like many people, deal with pain, the vagaries of aging, and a constant fight with the health care system. I sometimes think it is better to do nothing than to engage in another stressful encounter or have yet another test or explain myself yet again to a new health professional. Having a chronic illness is hard work.
“Naming your condition did not change you. It does not define you, but it does change the way you and the world might think about you.”
— Quote from Kate Lorig’s blog post