Laurie Edwards - In the Kingdom of the Sick: A Social History of Chronic Illness in America

Life Disrupted: Getting Real About Chronic Illness in
Your Twenties and Thirties

Copyright 2013 by Laurie Edwards

All rights reserved. No part of this book may be used or reproduced in any manner whatsoever without written permission from the publisher except in the case of brief quotations embodied in critical articles or reviews.

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Published by Walker Publishing Company, Inc., New York
A Division of Bloomsbury Publishing

Library of Congress Cataloging-in-Publication data has been applied for.

eISBN: 978-0-8027-7827-7

Visit Walker & Companys website at www.walkerbooks.com

First U.S. edition 2013
Electronic edition published in April 2013

For Victoria,
my joy

Chapter 1
From Plato to Polio
Chronic Disease in Historical Context

Chapter 2
An Awakening
Medicine and Illness in PostWorld War Two America

Chapter 3
Disability Rights, Civil Rights, and Chronic Illness

Chapter 4
The Womens Health Movement and Patient Empowerment

Chapter 5
Culture, Consumerism, and Character
Chronic Illness and Patient Advocacy in the 1980s and 1990s

Chapter 6
A Slight Hysterical Tendency
Revisiting The Girl Who Cried Pain

Chapter 7
Into the Fray
Patients in the Digital Age

Chapter 8
Participatory Medicine and Transparency

Chapter 9
What Future, at What Cost?

When I was growing up in the 1980s and 90s, Bostons famed Longwood Medical Area was as much my place of education as the small parochial grammar school I attended. Some of my most vivid memories were of my mother driving me down Route 9 to my doctor appointments, past the strip malls and chain restaurants of the western suburbs, past the reservoir in Brookline, where the crimson autumn leaves formed a circle around the gray expanse of water. These morning drives are almost always sunny and autumnal in my memory; we would squint up as we were stopped at traffic lights, always worried about being a little late, always underestimating the drive or underestimating our likelihood of getting every red light through three or four towns.

If it was a good appointment, Id leave with an antibiotic script for my ever-present ear and sinus infections, a follow-up appointment, or a referral for yet another specialist for my wheezy lungs. If it was a bad appointment, it would usually involve a CT scan, a blood test, or the scheduling of another surgery. Either way, wed get in the car and head back down Route 9, usually too late for me to make it back to schoolI knew this would happen but wore my uniform anywaybut just early enough to beat rush-hour traffic. We would talk about my upcoming surgery, or about the books I would get as presents for my recovery, or the classes Id missed and the sleepover I hoped Id make it to on the weekend.

But chronic illness? I dont remember hearing that term, and I certainly dont remember using it in reference to my own patient experiences. I lived in reaction to each illness event, never quite acknowledging the larger pattern.

It wasnt just another infection, another setback, another disruption. It wasnt going to go away.

Certainly, I dont blame the grade school version of myself for overlooking this distinction, or the high school and college version, either. Even if I knew it intellectually by then, emotionally it was another adjustment altogether. And I know I wasnt alone. In fact, I think this is the most daunting aspect of any chronic illness, whether you are the patient grappling with a diagnosis or a healthy person who hopes it never happens to you: It isnt going to go away.

Back then, I was a kid who was sick, who divided her time between school, friends and family, and doctors and hospitals. Now, I am an adult patient with lung and autoimmune diseases: primary ciliary dyskinesia (PCD), bronchiectasis, and celiac disease, among other conditions. I cough and wheeze a lot, and since I dont have the working cilia to flush out mucus and debris from my lungs and respiratory tract, I get a lot of infections that compromise my airways and my oxygenation. I have daily chest physical therapy, in which my lung lobes are clapped in several different positions. I take pills for a sluggish thyroid and use inhalers and nebulizers to help keep my airways open, and long-term antibiotics are a necessary evil in my world. Ive spent far too many weeks of my life in the hospital, including the trauma unit and the ICU, but Ive also done so much of what healthy people do: graduated high school and college; studied abroad for a year; pursued a graduate degree; and got married. I spent four long years trying to have a child and made it through a medically intensive, complicated pregnancy to deliver a healthy little girl. I work full time and have freelance work. These are the extremes that characterize life with chronic illness, and almost 130 million Americans contend with them to some degree.

Much about chronic illness has changed since I was a child. People with cystic fibrosis, a disease similar to my own lung disease, have seen their life expectancy reach almost forty, and people with type 1 diabetes can use insulin pumps and continuous glucose monitors to control their Children now spend more time watching television or using computers than playing outside, and First Lady Michelle Obama launched a campaign to fight against childhood obesity. Patients can e-mail their doctors and get text messages from their pharmacies, and social media platforms are now places where patients connect and advocate.

It is a whole different world, indeed. Cultural, scientific, political, and economic influences have changed how we classify and respond to the patient with chronic illness. Centuries ago, disease was thought to stem from an imbalance of bodily humors and fluids; infectious plagues were blamed on divine retribution; people with tuberculosis were shipped off to sanatoriums; and diseases like multiple sclerosis were considered nervous or hysterical disorders. In more recent decades past, chronic illness conjured images of arthritic elderly patients, and cancer was still spoken of in metaphors and hushed tones, which Susan Sontag assailed in her polemic Illness as Metaphor.

When the idea for this book first took root several years ago, I was a young college English instructor teaching a debut course called Constructions of Health in Contemporary Literature to a group of college freshman interested in the health sciences. As we tackled such heavyweights as David B. Morris and Sontag, I worried about relevancy. Would my students see the connections between illness and culture, between the words we use to describe and assimilate illness and the actual patient experience? They might not have been as intrigued or riled up by the use of metaphorical language as I was, but relevancy was not something I needed to worry about, after all. They spoke of loved ones with cancer, and of depression and addiction. They were riveted by Frontlines Age of AIDS documentary, and wondered how proceeds from the red Razr phones they saw advertised would really play into AIDS research, as the holiday commercials they watched touted. They saw the blurring of consumption, culture, and sickness, and they realized that the science they learned in other classes did not exist in the vacuum of the classroom or the laboratory.

Porters claim is equally germane today, even though, as my students and I discovered, the stakes have changed. Now, for as much knowledge as we have about the biological origins of many genetic, autoimmune, and viral disorders, still millions live with illnesses that arent merely invisible to others but are not easily identified in laboratories or imaging centers, either. For as many technological and lifestyle resources as we have at our disposal, for as good as our health is compared to centuries past, larger numbers of us are sick.