There are several new voices about living with chronic illness: Jenni's Chronic Babe, Kris's Crazy Sexy Cancer, and Laurie Edwards author of Life Disrupted: Getting Real about Chronic Illness in your Twenties and Thirties.
I read Edwards' books and will write about it here.
Edwards has written a roadmap to what her life has been like with serious ailments that had no clear diagnosis until she was finally diagnosed with Primary ciliary dyskinesia or PCD in 2003 along with celiac disease. Her book, Life Disrupted: Getting Real about Chronic Illness in your Twenties and Thirties is organized in three vital sections: medical life, public life and personal life. Edwards tackles each of these sections with compassion, courage, humor and a lifetime of real world experience. She's learned solid lessons about being the best advocate for your health; not letting illness and disease define you; and how "[b]eing well means being able to find a place for chronic illness within the context of our relationships and our professional lives, not at the expense of them."
With recent advances in medicine, children with serious illnesses are growing up and living, thriving really, with chronic disease into young adulthood and beyond. She writes: "...It's clear that the population of young adults who are trying to forge productive, dynamic lives while contending with bodies that do not always behave as we'd like them to is enormous. Never before have medicine and society had to contend with issues like the effects of care giving on young marriages and relationships or with seriously ill young adults having children on such a large scale, but here we are."
Her book illuminates the difference between illness and disease: "disease, then, is the stuff of laboratories, specimens, and procedures - the result of diagnostic inquiries and tests...illness, though, refers to the actual experience of living with conditions..." She tackles issues like having a job, a boyfriend, managing college and the workplace, being a regular in the hospital, and how one reenters the world of healthy people after about of illness.
As someone with lifelong asthma and allergies, I hadn't considered myself as someone with chronic disease (although I fit the general parameters). Regardless, much of what Edwards wrote about I identified with like chest physiotherapy (chest PT) or "cupping." My family was introduced to this technique of breaking up the mucus in one's lungs in the late 1970s. I was having a bad bout of asthma while on a family trip in Boston. We ended up at Children's Hospital; all I wanted to do was go on the Swan Boats. The "lady doctor," rare in those days, showed my mother how to "hit" my back with cupped hands. It makes a clip-clop sound and breaks up the phlegm. It's a highly effective, non-medicinal and non-invasive method and I have since used it during bad bronchitis infections. However, I hadn't read about anyone else using that technique; it was like hearing about an old friend.