Laurie Edwards is all too familiar with life in the “kingdom of the sick,” which is how cultural critic Susan Sontag famously described the hidden world of chronic illness. From an early age, the 32-year old writer, blogger and mother of a young daughter has spent weeks of her life in the hospital and endured dozens of surgeries. Every day, because of her rare respiratory disease, she struggles to breathe.
Now, in her groundbreaking book being released today, In the Kingdom of the Sick: A Social History of Chronic Illness in America, Edwards gives a needed big-picture analysis of the biological realities—and cultural influences—of the experience of chronic illness, a reality for an estimated 133 million Americans. This is a bitter irony of our modern times. More people than ever are left to live and struggle for decades with chronic illness—an umbrella term that encompasses everything from heart disease, respiratory disease and gastrointestinal disease to many pain conditions.
I talked with Edwards about her research, and the activism needed for better treatment.
Ms. Blog: 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.
In your book, you address some of the most misunderstood women with chronic illness: those with rare diseases. Why is that so?
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 80 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. I wasn’t correctly diagnosed [with my disease] until I was 23.
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.
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?
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.
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.
Why are those with chronic illness still stigmatized, despite all the developments in spreading information online? And how does Benjamin Franklin relate to this?
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 impossible to meet.