Alumna Writes About America’s Relationship with Chronic Illness
April 8, 2013 – Laurie Edwards (C’02), who spent her childhood in and out of hospitals, hopes her new book, In the Kingdom of the Sick: A Social History of Chronic Illness in America, will educate both the chronically ill and the general public.
Edwards, who will be interviewed by Terry Gross on NPR’s Fresh Air program in the next week or so, has Primary Ciliary Dyskinesia (PCD), a rare genetic respiratory disease, and other medical problems.
The alumna’s second book will be published April 9 by Walker Publishing Company.
“For patients, I hope the book resonates with their own experiences,” says Edwards, who has had numerous infections and surgeries because of her PCD. “I am a firm believer that the universal aspects of illness – acceptance, adaptation, guilt and suffering – unite us more than disease-specific symptoms separate us, and if the book can drive that home, that is great.”
More than 133 million Americas are chronically ill, she says, and she hopes the book also will be a catalyst for “how patients can be engaged and truly take part in collaborative care.”
By collaborative care, she means patients and their families taking a more active role in the process of diagnosis and treatment. She says PCD, for example, is “notoriously hard to diagnose – an estimated 25,000 have PCD, but only about 400 of them have been correctly identified.”
Moving Past Stereotypes
She also hopes that a wide swath of people, from public health and medical professionals to advocates to the average person who likely knows someone with a chronic illness, will learn something from the book.
“It’s time to move past outdated stereotypes of hysterical illness or the notion that people who are sick are inherently weaker, or that it is a reflection of their character,” says Edwards, who lives outside of Boston with her husband, daughter and rescue dog. “Science has the potential to dispel these myths and demystify so many aspects of diseases, but cultural and social assumptions have to follow suit, too.”
The Georgetown English major, who holds an MFA in nonfiction from Emerson College, now teaches health science writing at Northeastern University.
She has written for the New York Times, most recently an op-ed on “The Gender Gap and Pain,” the Boston Globe and its magazine, Glamour and writes a regular blog. In 2009, she participated in a roundtable discussion about health care with former President Bill Clinton (F’68) at the Clinton Foundation.
Supportive Faculty, Friends
Walker published her first, more personal book, Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties, in 2008.
“It was great to see that the challenges, strategies and experiences I discussed in the book connected with many patients in similar situations,” Edwards says. “To this day, I hear from patients who are responding to a sense of validation and lack of isolation as a result of reading the book, and that is encouraging.”
Edwards says got tremendous support at Georgetown from faculty, university leaders, her roommates and friends.
“They (her friends and roommates) stayed with me in the hospital, they advocated for me, and they really understood that chronic illness is unpredictable,” she explains. “They never acted like my illnesses defined me. And from the dean’s office to individual instructors, faculty were supportive, helpful, and worked with me to help me succeed.”
Edwards decided to attend the university, she says, because she was “attracted to the energy I felt when I visited campus – everybody seemed so busy, and so engaged in what they were doing on campus, and I wanted to be a part of that.”
“I was really interested in journalism, having done a lot of writing and newspaper work in high school, so the potential internship opportunities that come with living in D.C. appealed to me, too,” she explains. “The fact that it is a Jesuit school was also something that really resonated with me.”
Despite having “a lot of disruptions and setbacks” in her health status while at Georgetown, she still managed to participate in a program in which students were matched up with oncology and hematology patients to serve as a source of support.
“It was pretty surreal, though,” she notes. “Occasionally I’d have to miss a meeting or visit because I was an inpatient at the same hospital.
Terrific Student, Teacher
Academically, her standout memories include taking journalism director Barbara Feinman Todd’s internship course, English professor David Gewanter’s Modern Poets seminar and adjunct professor William Daddio’s sociology courses.
“She is so incredibly knowledgeable and such a good mentor,” Edwards said of Feinman Todd.
The two have kept in touch over the years.
“Laurie was a terrific student and I'm confident she's a great teacher,” Feinman Todd says. “Her books make a considerable contribution to the field of public health and gender issues, and she's a tremendous storyteller with an important message.”