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.

 

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Tags: 5, illness, nonfiction, questions, women

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Comment by Beth Anne Reed on April 22, 2013 at 8:21am

I will definitely have to read your book Laurie, and I congratulate you that you have been able to turn such trouble into something helpful and healing.  I spent years going from doctor to doctor and feeling broken only to find out that I had a pituitary tumor (which can cause all sorts of multi-disciplinary trouble).

Comment by Yehudit Reishtein on April 17, 2013 at 5:14am

My daughter at age 19 started having chronic abdominal pain that was totally debilitating--often she could not even stand up straight and had to spend much of her time in bed. This was a young woman who was up to that time a competitive athlete. When the pain got really really horrible, she would consent to go to the emergency room.  They did not want to let me accompany her into the examination room, but we both insisted, and I stayed with her (usually I read to her while we waited to be seen and then for the results of the blood tests). One Dr told me I couldn't stay when he examined her. I replied that I was going to stay and when he got to the questions about her sexual activity I would leave the room (PS I was allowed to stay even for that). Then they would give her a shot of Demerol and send her home. After going back and forth with her regular doctor several times, and going to several different specialists, she was referred to a gynecologist, who figured out it was endometriosis, and started her on birth control pills. Several laparoscopic surgeries later and after a series of different formulas of birth control pills, they found the right combination of medications to control the problem.

Bottom line: If you have a chronic problem, keep insisting on finding the cause of it and don't be afraid to change doctors to do so. And the only time it is "all in your head" is if it is anatomically located there (like an aneurysm, brain cancer, inner ear problem, etc).

Comment by Jennifer Richardson on April 16, 2013 at 2:18pm

Enjoyed this and Laurie's interview on Fresh Air last week. Her excerpt inspired me in part to write this:

http://www.shewrites.com/profiles/blogs/life-with-my-so-called-chro... about my own experience with MS.

Comment by Kristen Elise on April 16, 2013 at 12:00pm

This is a great interview and I can totally relate.  When I was 19, I developed a form of hyperthyroid disorder.  Despite my insistence that it was NOT "all in my head", I was mis-diagnosed for more than a year - first with the flu, then with panic attacks, and finally with anorexia - and was prescribed anti-depressants and mood stabilizers that I refused to take - before a smart doctor thought to do actual blood work.  When he came back with the diagnosis and said, "yes, this is actually quite common among young women your age", I thought "then why didn't anyone else think of it before now?"  SO frustrating, but I was glad to finally get the diagnosis and be on the right track.  Once diagnosed and treated properly, I have had no problems :)

Comment by Julie Luek on April 15, 2013 at 12:53pm

I follow a blog, Life your Way!, written by a courageous, humorous and sensitive woman living with chronic illness. I love reading her fantastic humor and learning what it is like for her to live so misunderstood and misdiagnosed. She constantly teaches me and helps me gain greater understanding. Thank you for sharing your story with such candor. I'm quite sure there is an audience who needs to feel completely understood.  

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