Chronic illness. As soon as you see the words, you probably think of diseases like diabetes, arthritis, fibromyalgia, or lupus, some of the thousands of diseases synonymous in our cultural lexicon with the phrase “treatable, not curable.” Insulin regulates blood sugar and anti-inflammatory medications target joint pain the way antibiotics maintain health status in people cystic fibrosis or steroids aim to reduce the inflammation in people with Crohn’s disease. None of these treatments rid diseases themselves but aim to reduce the symptoms and the sometimes life-threatening complications of them.
But you already knew that.
Thankfully, the particular nuances of chronic conditions versus acute ones are more widely recognized than ever before. But should the concept of “chronic disease” broaden even further, and if so, do cancer and eating disorders deserve a place in the fold? It’s a compelling question, and one hotly debated in both medicine and politics right now.
From physician interviews on NPR to articles like this one from Salon.com, the recent cancer diagnoses of like Elizabeth Edwards and Tony Snow have made the term “living with cancer” a trendy and oft-published one. If some cancers are the “new” chronic illness, what’s at stake for the patients involved?
Two decades ago, Susan Sontag argued eloquently against the use of metaphor in regards to cancer (required reading in some of my classes), and her notion that to look at cancer through the lens of the military metaphor is a disservice to the cancer patient rings even more true today. If patients fight a "war" against cancer and if they fight hard enough, they win that epic battle, where does that leave the patients who do everything they are supposed to but succumb to lethal cancers anyway? Such a view is too narrow to encompass living with--not dying from--cancer. As Salon’s Walter Shapiro writes,
“What appears to be happening is that medical advances in cancer treatment are removing much of the stigma from the disease. As Humphrey Taylor, the chairman of the Harris Poll, put it, ‘Medically, cancer has gone from a fatal disease to something that is curable -- or something that you could live with for many years and die of something else.’ In presidential-election terms, Taylor said, ‘as long as candidates look vigorous and act vigorous, I don't think cancer will be a problem.’”
Bringing this from the political sphere to the personal, “living with cancer” reflects a reality I know well—it’s a question of sustained treatment and stability, rather than a cure (and, more importantly, rather than impending death). My father has been on maintenance chemotherapy for fourteen years and will remain so for the rest of his life. It helps control the progression of the rare disease that attacks his muscles and spurs the growth of tumors. In that sense, his chemo is similar to the insulin he takes for his diabetes, the statins he takes for his heart disease, the medications he takes for his gout—it treats it, it helps him live his life, but it won’t ever cure it.
He works, he travels, he golfs, and he never misses a chemo treatment so he can keep doing that. Elizabeth Edwards’s plight reflects that of so many ordinary patients—except due to her notoriety, hers affords the rest of us an opportunity re-examine what we think of as chronic illness.
An equally compelling—and, as far as I can tell, much less talked about—consideration is that put forth by author Trisha Gura in her new book, Lying In Weight: The Hidden Epidemic of Eating Disorders in Adult Women . While the age distinction Gura makes (this isn’t just a problem for teenage girls) is important on its own, what really strikes me is her query into eating disorders as chronic diseases: like so many chronic illnesses, eating disorders reflect a combination of genetic/biologic predispositions and environmental variables and often re-emerge in response to emotional triggers.
Rather than considering them “recovered,” patients and physicians should consider women with a history of eating disorders whose symptoms have subsided as in “remission.” Gura supplies ample research on relapse patterns in adult eating disorder patients to help shape this new view on them. She writes,
“These findings suddenly turn the whole idea of eating disorders recovery on its head. Recovery, meaning that the disease disappears forever, is a fallacy. The reality is that time, the length of time a person is symptom-free, becomes important in characterizing a patient’s state of mind, and, by extension, her health.”
The ultimate question is, of course, is it worthwhile for patients to consider certain cancers and eating disorders chronic diseases? Any sort of chronic illness implies ongoing vigilance and maintenance, speaks to periods of exacerbations as well as periods of increased health, and requires certain behaviors or treatments to reach a state of optimal control and stability.
Sounds pretty reasonable to me.