Sunday, May 27, 2007

Medicine and Politics: A New Look at Chronic Disease

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.

8 comments:

Harriet Brown said...

I think Gura should look at some of the most recent research on eating disorders. Long-term outcomes for young adolescents treated with the Maudsley method show what looks like not just remission but total recovery, though long-term studies need to keep following these kids. The bottom line is that if young adolescents are weight-restored early and promptly they have a good shot at true, full recovery. And I think it does them a great disservice to insist that they are only "in remission," vulnerable to the reemergence of an e.d. at any time. The middle-aged women who are relapsing now were NOT promptly weight restored; they were given the standard (and quite useless) treatment of talk therapy and told they had to "choose" to recover. An anorexic cannot "choose" to recover. New treatments are bringing new results. For more on Maudsley see www.maudsleyparents.org.

--Harriet Brown
harrietbrown.blogspot.com

Richard said...

Laurie:

I'm the President of the Well Spouse Association (www.wellspouse.org), a support group for spouses or partners of persons with chronic illness and/or disability and what you say here rings very true, certainly for cancer. A number of our members are married to/partners of people with various cancers, that really are chronic illnesses these days, that recur from time to time for some -- as with Elizabeth Edwards.

Cancer certainly can be beaten, and there are lots of cancer survivors out there -- our story is that there are also, for many of the survivors mates who backed them up when they were battling their cancer, and who are still there now, as well spouses, who support them through thick and thin!

All the best, Richard Anderson,

Richard said...

Laurie:

I'm the President of the Well Spouse Association (www.wellspouse.org), a support group for spouses or partners of persons with chronic illness and/or disability and what you say here rings very true, certainly for cancer. A number of our members are married to/partners of people with various cancers, that really are chronic illnesses these days, that recur from time to time for some -- as with Elizabeth Edwards.

Cancer certainly can be beaten, and there are lots of cancer survivors out there -- our story is that there are also, for many of the survivors mates who backed them up when they were battling their cancer, and who are still there now, as well spouses, who support them through thick and thin!

All the best, Richard Anderson

Trisha Gura said...

I am Trisha Gura, the author of "Lying in Weight: the Hidden Epidemic fo Eating Disorders in Adult Women," noted in the blog. I wanted to respond to Harriet's comment.

Indeed there are new and better treatments. And indeed, there are simply no long-term followup studies (more than 20 years) that can attest to how effective, longterm, the treatments are. Harvard researchers chose the word "remission" instead of "recovery" in their seminal article about the topic of recovery not to spread pessimism or "do a great disservice" to young women but rather to alert them to possible outcomes if careless about what they learned in therapy or when under enormous stress as bred by life transitions i.e. marriage, pregnancy, parenting, mid and and late life.

Many women I talked to were given more than standard talk therapy and still relapsed. They felt like "double losers" when older because 1. they had the eating disorder and 2. they felt they should be over it by now. I was speaking to this contingent in the book.

Good luck with your involvement with Maudsley.

Trisha Gura
trishagura.com

Laurie said...

You've all given us a lot to think about.

Richard, thanks for dropping by--as the daughter of two spouses who support each other through serious illnesses and have for decades and as the wife of an incredibly supportive, compassionate man, I know firsthand how closely the "living" part of living with chronic illness is tied to the people who love us.

Harriet and Trish, thanks for your posts. Best of luck with Maudsley, and hopefully we will start seeing the type of long-term studies we need to really assess how different methods work over a lifetime.

Trish, I can't tell you how fascinating I find your book. As I mentioned, I think it's so important to point out that these problems affect women across the age spectrum, but I also am personally compelled by this notion of remission--not in a ngeative or pejorative sense, but in an alert, self-aware sense.

It all depends on perspective, I suppose--if you're willing to look at eating disorders as chronic diseases, then remission makes a lot of sense. If not, then it doesn't. Fair enough. Bringing the chronic disease analogy one step closer, my father was in remission for twelve years before his condition emerged again. We hoped it wouldn't, but were prepared when it did. Perhaps I am comparing apples to oranges here, but I think there are commonalities between the two that make this view of eating disorders a worthy inquiry--it may not be the final answer, but it could make a difference, especially for women in different stages of life.

Alexandra Lynch said...

I have had an eating disorder. I view it kind of the way I view my ankle. I sprained my ankle once. It's healed, and doesn't hurt, but if I twist it that way again, it will be more likely to give way again, because there's a weakness there now.

I see my eating disorder the same way. I've learned a better relationship to food, and to fear and to anger and to stress. But I do have to be very careful when under stress, or dealing with a lot of physical or emotional pain, because I will always have a flaw in that direction, and rather than drinking or too many pills, I'll binge.

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