Sick and Tired: An Intimate History of Fatigue

By Emily K. Abel

Medicine finally has discovered fatigue. Recent articles about various diseases conclude that fatigue has been underrecognized, underdiagnosed, and undertreated. Scholars in the social sciences and humanities have also ignored the phenomenon. As a result, we know little about what it means to live with this condition, especially given its diverse symptoms and causes. Emily K. Abel offers the first history of fatigue, one that is scrupulously researched but also informed by her own experiences as a cancer survivor. Abel reveals how the limits of medicine and the American cultural emphasis on productivity intersect to stigmatize those with fatigue. Without an agreed-upon approach to confirm the problem through medical diagnosis, it is difficult to convince others that it is real. When fatigue limits our ability to work, our society sees us as burdens or worse.

With her engaging and informative style, Abel gives us a synthetic history of fatigue and elucidates how it has been ignored or misunderstood, not only by medical professionals but also by American society as a whole.

• Language: English
• Publisher: The University of North Carolina Press
• Release date: Mar 19, 2021
• ISBN: 9781469661797

Emily K. Abel

Melanie Kay Smith (PhD) is an Associate Professor, Researcher and Consultant whose work focuses on urban planning, cultural tourism, wellness tourism and the relationship between tourism and wellbeing. She is Programme Leader for BSc and MSc Tourism Management at Budapest Metropolitan University in Hungary. She has lectured in the UK, Hungary, Estonia, Germany, Austria and Switzerland as well as being an invited keynote speaker in many countries worldwide. She was Chair of ATLAS (Association for Tourism and Leisure Education) for seven years and has undertaken consultancy work for UNWTO and ETC as well as regional and national projects on cultural and health tourism. She is the author of more than 100 publications.

Book preview

Sick and Tired

Studies in Social Medicine ▪ Allan M. Brandt, Larry R. Churchill, and Jonathan Oberlander, editors

A complete list of titles published in this series appears at the end of the book.

SICK AND TIRED

An Intimate History of Fatigue

Emily K. Abel

The University of North Carolina Press ▪ Chapel Hill

This book was published with the assistance of the Lilian R. Furst Fund of the University of North Carolina Press.

© 2021 Emily K. Abel

All rights reserved

Designed and set in Utopia with Gotham and Univers by Rebecca Evans

Manufactured in the United States of America

The University of North Carolina Press has been a member of the Green Press Initiative since 2003.

Cover illustration: detail from John William Godward, Mischief and Repose, 1895. Digital image courtesy of the Getty Museum’s Open Content Program.

Library of Congress Cataloging-in-Publication Data

Names: Abel, Emily K., author.

Title: Sick and tired : an intimate history of fatigue / Emily K. Abel.

Other titles: Studies in social medicine.

Description: Chapel Hill : The University of North Carolina Press, 2021. | Series: Studies in social medicine | Includes bibliographical references and index.

Identifiers: LCCN 2020024185 | ISBN 9781469661780 (cloth : alk. paper) | ISBN 9781469663340 (pbk. : alk. paper) | ISBN 9781469661797 (ebook)

Subjects: LCSH: Abel, Emily K. | Chronic fatigue syndrome. | Fatigue—Popular works.

Classification: LCC RB150.F37 A24 2021 | DDC 616/.0478—dc23 LC record available at https://lccn.loc.gov/2020024185

Contents

Introduction

1 ▪ Living with Fatigue

2 ▪ Learning from Pain and Depression

3 ▪ A History of Fatigue

4 ▪ Rest: Becoming Fit for the Forthcoming Labor

5 ▪ Fighting Fatigue

6 ▪ Remembering Sickness

7 ▪ Rewriting the Story

Conclusion

Acknowledgments

Notes

Index

Sick and Tired

Introduction

Medicine finally has discovered fatigue. No longer viewing it as an inevitable feature of the approach of death, palliative care specialists regard fatigue as a distinct disorder, requiring medical intervention.¹ Recent articles about a host of diseases, including inflammatory bowel disease, chronic hepatitis C, chronic obstructive pulmonary disease, psoriatic arthritis, type 1 diabetes, postural orthostatic tachycardia syndrome (POTS), endometriosis, sarcoidosis, and depression, conclude that fatigue is underrecognized, underdiagnosed, and undertreated.² According to the National Cancer Institute, fatigue following cancer treatment is not relieved by rest or sleep, can impair all aspects of life, and may last for years.³

But when I finished six months of breast cancer therapy, including surgery, chemotherapy, and radiation, in 1993, the situation was very different. When I complained about the overwhelming fatigue that persisted months and then years after the end of treatment, doctors prescribed psychotherapy, explaining that patients commonly suffered from depression after cancer. Other breast cancer survivors, I was told, reported nothing like this. Why, I wondered, did so many people doubt I had a real problem? Why did fatigue seem so shameful to me? How could I imbue my experience with a different meaning? How do others live with different types of fatigue? And how do cultural values inform the ways they narrate their experiences? This book originated in my attempt to answer those questions.

One challenge I immediately encountered is that fatigue is an ambiguous concept. It can be physical, mental, emotional, and spiritual, and it includes everything from ordinary tiredness to complete, unrelenting exhaustion. Defined as lack of energy, fatigue connotes lethargy, weakness, and an inability to work. Advertisements for products to fight fatigue often tout them as energy boosters. When synonymous with tiredness, fatigue can mean old and worn out, as in tired lettuce and tired jokes. Arriving at a physical therapy appointment for chronic pain, journalist Melanie Thernstrom shrank away from the other patients, afraid to be grouped with the tired, old, sick, disabled, and sad. The waiting room seemed to be filled with inhabitants of a village of the damned.⁴ When defined as exhaustion, the term occasionally serves as a euphemism. Some celebrities claim that they need treatment for exhaustion when they vanish into hospitals and rehab centers for drug or alcohol addiction. Fatigue also can mean jaded. In 2006 researchers at the University of Utah coined the term racial battle fatigue to explain how African American students respond to microaggressions on predominantly white college and university campuses.⁵ We also hear about disaster fatigue, culture wars fatigue, pink ribbon fatigue, compassion fatigue, and information fatigue, to name just a few. And fatigue often connotes idleness, which early church fathers condemned as one of the seven deadly sins and today still is widely considered a moral failing.⁶

Mindful of those issues, I began to try to understand my experience by interrogating the health beliefs I acquired in childhood as well as the various academic disciplines and health-care movements that had helped me modify them. Then I cast my net more widely, expanding my inquiry to explore broad issues related to health, illness, and disability. As I did so, a number of themes repeatedly emerged.

The first was the denigration of subjective knowledge or more precisely embodied knowledge, which derives from people’s perceptions of their bodies.⁷ As a historian I knew that in earlier centuries, patients’ accounts figured prominently in clinical assessments. In the absence of virtually all diagnostic technologies, doctors had to listen to patients’ narratives about their bodies. The second half of the nineteenth century, however, witnessed the introduction of stethoscopes and thermometers. By the 1920s, hospital doctors had access to the EKG, blood pressure cuff, and X-ray machines. And today, physicians can rely on new cytological, imaging, and immunological technologies that produce even more precise information.⁸ But there are no diagnostic tools for fatigue. I thus faced the same issue as those suffering from pain and various contested diseases—without medical confirmation, we cannot convince others (and sometimes even ourselves) that our problems are real.

Laura Hillenbrand, the author of Seabiscuit, explains how the absence of medical legitimation can weaken support networks. Hillenbrand was in college when chronic fatigue struck, and she was forced to return to her parents’ house for care. Much later, her sister acknowledged, She didn’t get the family support she should have. That’s one thing I still feel bad about. It took years, unfortunately, to find out how bad it was. For a long time we just expected she’d get better and go back to college. Then it became clear she wasn’t getting better.⁹ Her boyfriend stuck with her, but his friends urged him to move on. Most of her friends disappeared.¹⁰

I found validation in a support group. As one observer writes, those groups create their own separate and distinct medical culture, a culture that gives primary importance to the role of subjective experience.¹¹ While listening to other members describe their lives, I drew parallels with my own, reinforcing my belief that I, not doctors, knew best. I also learned that support group members sometimes translate their sense of community with other sufferers into activism, arguing that their personal feelings of distress must be more recognized.

The second theme is the cultural emphasis on productivity. Productivity refers to the ratio of outputs (the monetary value of goods and services) to inputs (typically defined as the hours worked). Because our society links personal worth to the amount individuals produce, people lose respect and social legitimacy when fatigue constrains their ability to work. The consequences are different for workers at opposite ends of the occupational hierarchy. Marketing campaigns bombard those at the top with advertisements for expensive products promised to enhance energy levels. Those at the bottom frequently are condemned as burdens.

The impact of fatigue on my own work life was immediately clear. I took a break from teaching and suspended writing the book I needed for promotion. I knew I was fortunate to be able to do this. Although my income plummeted, my husband’s salary continued to sustain our household. Nevertheless, I faced some of the most emotionally charged and persistent questions about work and morality: In a society that places inordinate emphasis on the work ethic, who is entitled to remain out of the labor force? How can unemployed people find another source of human worth? When does devotion to work become excessive?

The third theme is the dominance of triumphal narratives. When I finished cancer treatment, I assumed my troubles were over. Doctors, family members, and friends reassured me. I read scores of breast cancer recovery narratives. Now I’m well, they all proclaimed at the end. The insistence on recovery narratives reflects two strands in American culture. One is the belief that modern medicine has a cure for every affliction, that even the most grievous illnesses and injuries can end happily. The other is the conviction that with enough grit, hard work, and determination, individuals can overcome any adversity. "I’m not sure that overcoming disability itself is an actual possibility for most of us, writes essayist and disability activist Eli Clare. Yet in a world that places extraordinary value in cure, the belief that we can defeat or transcend body-mind conditions through individual hard work is convenient. Overcoming is cure’s backup plan."¹²

Even those with serous disabilities feel compelled to couch their experiences in the form of recovery stories. Franklin Delano Roosevelt’s charade (or splendid deception, in the words of historian Hugh Gallagher) is one of the most prominent examples. Roosevelt was a thirty-nine-year-old, handsome, charming politician when he was diagnosed with polio in 1921. Despite the widespread belief that his political career was over, he was elected president four times. He lost the use of both legs but gave the illusion of having overcome his impairments by demanding that journalists not photograph him in a wheelchair or walking with crutches and braces.¹³ My parents were fervent admirers, and although I was very young when he died, I saw pictures of a radiantly healthy president for many years. One historian has analyzed the two distinct waves of polio narratives. The first, appearing between the mid-1930as and mid-1950s, followed Roosevelt’s model. They concentrated on the terrifying diagnosis and grueling treatment but ignored any long-term impairments. The second, beginning in the mid-1950s, were accounts of an almost different illness. Challenging the Roosevelt myth, they described the experience not only of undergoing therapy and rehabilitation but also of living with long-term impairments in a society that demands that everyone be able-bodied.¹⁴

Nevertheless, the recovery narrative continues to wield enormous power in our culture, and even people who deviate from its script must contend with it in some way.¹⁵ At the end of her highly praised memoir Sick, the Iranian American writer Porochista Khakpour explained why she had not written a story of triumph, of how a woman dove into the depths of addiction and illness and got well. She had promised such a book to her publisher but her narrative insisted on its own ending. She concluded that human existence is always precarious, and sickness might be with you as long as life is with you.¹⁶ I was equally startled when I discovered that breast cancer is a chronic condition, not an acute one. Because the disease can return at any time, watchful waiting and second-guessing one’s body never end. I was even more shocked to discover that the lingering side effects of therapy also had made recovery elusive. And all around me was a celebratory breast cancer culture, publicizing survivors engaging in physically challenging activities and suggesting that I must have done something terribly wrong.

Personal accounts frame this book. Chapter 1 consists of a memoir chronicling my gradual awareness that my fatigue had lingered beyond its expiration date, the many ways it narrowed my life, the responses of doctors and the people in my social world, and my reaction to the scientific studies that began to appear. Subsequent chapters address the central themes in various ways.

The second highlights the disparagement of subjective knowledge. Because the literature about living with fatigue is very thin, I turned to writing about pain and depression, phenomena that often coexist with fatigue. Chapter 2 examines the meaning of fatigue by exploring the qualities it shares with those conditions. Like fatigue, they take various forms, affect more women than men, are extremely difficult to describe, and are far more prevalent than usually assumed. Moreover, because they can be known only through patients’ self-reports, many people believe they are either trivial or imaginary. The chapter also explores how the association of fatigue and depression in the popular imagination affects cultural attitudes toward fatigue.

Another way to understand the nature and representation of fatigue is to examine the past. Chapter 3 demonstrates that different eras produce different definitions of fatigue. The chapter begins with the late nineteenth and early twentieth centuries, when doctors came to view various conditions as symptoms of specific diseases. Although most accounts of fatigue at that time focus exclusively on neurasthenia, I give equal space to industrial fatigue, the center of attention of Progressive reformers. I then discuss stress and sleepiness today. Because fatigue operates as an obstacle to labor, each definition helps us understand American attitudes toward efficiency and productivity.

Perhaps nothing so clearly refutes the notion that fatigue is a trivial complaint as the catalog of the measures people have taken to combat it. At the same time, the widespread availability of remedies cements the belief that individuals easily can triumph over even the most serious forms of fatigue on their own, by taking naps, adopting a more active lifestyle, and ingesting any one of a number of energy-enhancing substances. Chapters 4 and 5 examine the history of those measures. The first demonstrates that Americans traditionally have viewed rest primarily instrumentally, as a way to enhance efficiency and productivity. The second focuses on two other major antidotes to fatigue: exercise and energy boosters, including electrotherapy, medications, caffeine, and amphetamines.

The final two chapters return to my personal experiences. Chapter 6 discusses the sources of the most powerful messages I received about health and illness as a child—the psychosomatic movement, as interpreted by my mother, and the polio epidemics of the 1940s and 1950s. Growing up at the height of the psychosomatic movement in medicine, I may have been especially inclined to believe that subjective knowledge of physical distress is useless without medical confirmation. The fund-raising campaigns surrounding polio taught me that recovery is the only acceptable outcome of illness. Chapter 7 explores the academic disciplines and social movements that enabled me to reconfigure those ideas. These included feminist scholarship and health activism, the health-care movements that sought to increase the legitimacy of subjective medical knowledge, medical history, and, above all, the disability movement and the academic field it spawned.

The conclusion first discusses changes that have occurred in breast cancer treatment in the past three decades and then examines what this project has taught me about the importance of validating subjective knowledge, the need to contest the exalted value placed on productivity, and how the tyranny of recovery narratives marginalizes those who live with chronic illness and disability.

ONE

Living with Fatigue

Even now, twenty-five years after it began, I’m not entirely sure I have a real problem.

A year, the oncologist said. It will take a year to feel like your old self. Because I believe she has saved my life, I assume she’s right. When I ask other breast cancer survivors how long it took them to recover from surgery, chemotherapy, and radiation, they assure me they felt fine after a few months. And so I wait. My hair grows back, my scar diminishes, but a deep, overwhelming fatigue remains the same.

Confident that I will be better soon, I return to teaching at UCLA, but nothing feels familiar. Even a few minutes in the classroom exhaust me, and I often worry whether I have the strength to drive home.

A year later, my husband and I spend a semester in New York, a city I have always loved. Although I live 3,000 miles away, the Upper West Side has long seemed like home. But now it is an entirely different place. Instead of walking down Broadway, my favorite street with all its exciting shops and crowds, I take refuge in parks. I avoid subways. My husband goes to plays and concerts alone.

And, frankly, he is fed up. He read all the literature on breast cancer treatment when I was diagnosed, sat with me through chemotherapy sessions, and cooked special, bland food the day after. But he assumed my need for care was time-limited. When I say I’m tired, he looks away or leaves the room. I complain about him to my friends, but when they sympathize, I get defensive—they don’t have to live with me.

When I try to tell friends about my fatigue, I imagine them thinking I’m exaggerating my woes, making too much of an everyday event. Everyone gets tired at some point. Some ask why I still walk faster than they do. When I explain that my fatigue is mental rather than physical, they want to know how I can continue to write books. I then explain that outside stimulation is what I can’t bear, not just loud noises and bright lights, but also intense interactions with other people. I’m fine if I sit at my desk at home, inside my own head. But I’ve never read a description of my problem and so don’t fully understand it myself. And I’m not sure how open I want to be. I want support but not pity or condescension.

One day I decide to go to a reception at UCLA that begins at 4:00. I rest at home until 3:30, when I don my professional attire and drive to campus. Everyone else has been there all day and is worn out. Compared to them, I must seem pretty good. But when they say I look great, I feel sad and angry and lonely and find myself confiding to a few friends that I’m not really doing so well.

I also seem fine when I attend a yearly academic conference. Everyone complains about fatigue at the end of the day. It’s hard to listen to papers all day. What I don’t reveal is that while they’ve been in sessions, I’ve been resting in my hotel room, emerging only to attend a few social events.

Years later a close friend has a stroke and then says now he knows how I’ve been feeling. I suspect what he means is that he never believed me before, and many people still don’t. A colleague who has heart surgery informs me that now he understands what I have told him. I thought I had been able to count on his support.

Other friends tell me that as they age, they begin to understand my fatigue. I try to keep my ungenerous thoughts to myself: I’m aging, too, and because I began at a much lower level of energy, they can’t possibly catch up. And it’s one thing to begin to feel tired at seventy, when you no longer are building a career, and quite another to experience a dramatic loss of energy at fifty, when your contemporaries are all just hitting their stride.

When I inform my internist about my condition, he sends me for a test for the Epstein-Barr virus. A few days later he calls to say my titers are very high and that I have chronic fatigue syndrome (CFS). But when I read that CFS is characterized by diffuse pain and flu-like symptoms as well as severe fatigue, I doubt that’s the correct label. And when I report the results to another doctor, he tells me that scientists have discredited the findings about a connection between Epstein-Barr and chronic fatigue. Although I continue to see my internist at least once a year after that, I assume he has nothing to offer for my fatigue and so never mention it again.

My oncologist is surprised to hear that my fatigue persists, but she assures me that scientists soon will find a drug to resolve it. I’m certain that I do not want to take another medication into my body. I also do not pursue the subject with her because I still see her as my savior. Her job is to keep a recurrence at bay and I don’t want to distract her. Alice Stewart Trillin wrote about the dragon that sleeps inside anyone who has had cancer. When I think about the possibility of awakening that dragon, fatigue seems somewhat trivial. In addition, I want her to see me as a good patient, and I have heard that doctors prefer patients whose problems they believe they have successfully resolved.

Another oncologist who specializes in breast cancer informs me with supreme confidence that I have depression. So I go to a psychiatrist who tells me I don’t seem very depressed—I just seem inordinately tired. Much later, when I read about people with nebulous problems who go from doctor to doctor to find relief, I wonder why I suspended my quest so quickly.

I receive another diagnosis in a support group I attend. The leader tells me she never heard of this kind of fatigue, but a cancer diagnosis always sparks post-traumatic stress syndrome, and that is what I have. That explanation makes sense, but again it doesn’t seem exactly right.

Because the classroom continues to shred my last bit of energy, a friend suggests I apply for a reduced teaching load under the 1990 Americans with Disabilities Act. I’m skeptical at first. I think the law applies only to people with real disabilities, like blindness and mobility problems, and real jobs, such as construction and waitressing. I’m afraid of appearing like a fraud. At the same time, although I’m shocked to realize it, I’ve never thought of disabled people as fully competent. Because fatigue is invisible, I am convinced I’ve been able to pass at work. I’m not sure I want to out myself now. But the fatigue is relentless and my friend is very persuasive and eventually I ask a lawyer friend to go with me to my department head. We agree that I will reduce both my teaching and my pay for three years. After three years, however, nothing has changed. I occasionally feel exhilarated in the classroom but afterward lie for hours in a darkened room.

I continually receive other suggestions—Chinese herbs, acupuncture, biofeedback, more acupuncture, general healers. I’m wary at first. I grew up in post–World War II America, when we blithely assumed medical science eventually would find a cure for every affliction. Also, although I used to ridicule the marble floors and luxurious waiting rooms of the UCLA medical center, such grandeur helped to inspire confidence in my treatment. Now I have appointments in shopping malls and dilapidated,