From an early age, because of a rare respiratory disease that makes breathing difficult, Laurie Edwards has spent weeks of her life in the hospital and endured dozens of surgeries. But the 32-year old teacher, blogger, and mother of a young daughter still has been able to publish two acclaimed books, including her just-released In the Kingdom of the Sick, which the Wall Street Journal recently said “offers an informative primer on chronic illness” in America, and which was featured on NPR’s “Fresh Air.” In this 5 Questions interview, Paula Kamen, the author of All in My Head, talks with Edwards about her eye-opening and dot-connecting research.
Paula Kamen: Why is chronic illness “a women’s issue”? How does that relate to the “gender gap” in chronic pain, which you wrote about in a recent New York Times op-ed?
Laurie Edwards: Women are disproportionately affected by many chronic illnesses, particularly chronic pain conditions, which affect 25 percent of Americans. A brief look at the numbers is revealing: Women are three times more likely than men to develop autoimmune diseases, two-and-a-half times more likely to develop rheumatoid arthritis and nine times more likely to be diagnosed with fibromyalgia.
There is much work to be done in understanding the underlying mechanisms of pain and sex-based difference when it comes to pain and illness, but research suggests a combination of physiological and hormonal influences at play. Women are not only more likely to develop certain pain conditions, but they are also more sensitive to pain. Unfortunately, research shows that women are also more likely to have their symptoms dismissed as emotional (a throwback to “hysterical illness”), and receive less aggressive treatment for physical symptoms when they are treated.
Paula Kamen: In your book, you address some of the most misunderstood women with chronic illness: those with rare diseases. Why is that so?
Laurie Edwards: Rare or orphan diseases are those that affect fewer than 200,000 patients. Some 30 million Americans live with 7,000 classified rare diseases. Nearly eighty percent of rare diseases are genetic, and because physicians don’t see them often and don’t always know to look for them, the diagnostic process is often long and complicated. My own rare disease, primary ciliary dyskinesia (PCD), is a respiratory disease that leads to frequent infections and decreased oxygenation. I’ve been sick since birth, had dozens of surgeries, and have spent many weeks of my life in the hospital, but I wasn’t correctly diagnosed until I was 23. While 25,000 Americans are thought to have PCD, only about 400 have been appropriately identified.
Though the climate is definitely beginning to change on this, historically, drug companies have been hesitant to invest in drug development for such small patient populations. More broadly speaking, rare diseases are overshadowed by the cause-related marketing and fundraising for more familiar and recognized diseases and their attendant awareness months and charity events.
In terms of gender, I think the compelling issue isn’t one of incidence so much as it is of accurate diagnosis. As we know, women often face the dismissal of their symptoms. Compound this with the fact that it is typically much harder to identify rare diseases, and even more delays can occur. I can absolutely relate to this personally. At my sickest, I was in the intensive care unit, fighting to breathe. When my lungs continued to deteriorate and no one could explain why, suddenly it became my problem: Was I too anxious, or could I simply not handle the stress of college exams? No matter how often I said that being sick and in the hospital caused me stress, not vice versa, when I didn’t improve it became an issue of my emotional state, not my very real physical symptoms.
When I was finally diagnosed, it was incredibly validating. But more than that, getting a name for my condition opened the door to more effective treatments, and as I spent less time in the hospital and could be more productive, my quality of life improved tremendously.
Paula Kamen: One doctor interviewed in your book calls chronic pain in women "a perfect storm" for revealing gender biases in medical treatment. What did she mean by that?
Laurie Edwards: I’ve interviewed many patients with chronic pain, as well as advocated and health professionals who work for them and with them, and they often see the same basic pattern emerging: a woman reports her pain and it is either dismissed or, in many cases, she is prescribed antidepressants rather than painkillers. Her physical symptoms progress and she becomes more isolated, which can lead to depression and anxiety.
This “perfect storm” as described by Dr. Sarah Whitman, a psychiatrist who specializes in working with patients with chronic pain, is complicated when patients have the added burden of a “woman’s illness,” like chronic pelvic pain, endometriosis, interstitial cystitis, etc.
Paula Kamen: You talk about the great influence of the women’s health movement of the 1970s, an offshoot of the greater women’s movement. How has that affected women’s experiences today with chronic illness?
Laurie Edwards: The women’s health movement promoted the notion that women should have access to appropriate health information about their own bodies, and should have a say in their medical decisions and what happened to their bodies. In what was an extremely patriarchal establishment, this was indeed radical.
What started as a shift in the balance of power in obstetric and gynecological care ultimately changed the nature of the doctor-patient relationship across specialties and diagnoses. And we see so many facets of this legacy, from improved understanding of women’s health issues to more collaborative care to more female physicians.
Scholar Beatrix Hoffman characterized this type of activism as “change from below,” and this was similar to the social movements taking place for disability and civil rights around the same time. This type of grassroots, “change from below” activism was also seen in the early AIDS movement just a decade later, and the criticism of the patriarchal nature of medicine helped give breast cancer activists a foundation. These two movements would end up having enormous influence on modern-day patient advocacy and activism.
One aspect of women’s health that was conspicuously absent from the women’s health movement was pain. As you know from your own research for All in My Head, calling attention to any perceived hormonal or physiological difference between the sexes that might account for the manifestation and severity of pain in women could potentially dilute the message that men and women were inherently equal.
Paula Kamen: Why are those with chronic illness still stigmatized, despite all the developments in spreading information online? And how does Benjamin Franklin relate to this?
Laurie Edwards: A pernicious assumption about patients with chronic illness is that their maladies are somehow their own fault—if only they had more willpower, or more physical and mental fortitude, they could prevent or improve their conditions. We see this in the criticism of patients with Type-2 diabetes or heart disease who should just go on a diet, just as we see it in the treatment of patients with more “nebulous” conditions such as chronic fatigue syndrome or fibromyalgia who should be able to “push through” the fatigue.
Culturally, we tend to value and prioritize self-reliance, physical fitness, and independence—and chronic illness defies these things. Benjamin Franklin was known for his fervent self-help talks, and since then self-improvement has been an ingrained feature of American life. Between their debilitating physical symptoms and the fact that many patients with chronic illness also need help managing the heavy financial burden of medical expenses, these notions of self-reliance and self-improvement set up expectations that are impossible to meet.
Laurie Edwards, who lives outside of Boston and teaches health and science writing at Northeastern University, is also the author of the book Life Disrupted: Getting Real about Chronic Illness in your Twenties.... For updates about In the Kingdom of the Sick, visit her Facebook page at www.facebook.com/laurie.edwards.3979. To read an excerpt of the book, visit the “Fresh Air” website.
To learn more about Paula Kamen's work, visit www.paulakamen.com.