As Long COVID spreads, and chronic fatigue syndrome (ME/CFS) moves into the limelight a bit, what a time to have a medical historian with post-cancer fatigue document how fatigue has been misunderstood through the ages. And how good to have Dorothy Wall, the author of “Encounters with the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome“, review this timely new work.
Emily Abel, Sick and Tired: An Intimate History of Fatigue (Chapel Hill: University of North Carolina Press, 2021)
What happens when a patient’s ongoing fatigue is misunderstood and dismissed, and she happens to be a medical historian? We get a smart new book, Sick and Tired: An Intimate History of Fatigue.
In 1993, after six months of treatment for breast cancer, including surgery, radiation and chemotherapy, Emily Abel experienced profound fatigue that did not go away. Her oncologist reassured her: “A year. It will take a year to feel like your old self.”
That year passed, and another, and another, and Abel was not her old self. She reduced her teaching load at U.C.L.A., rested in her hotel room during academic conferences, and tried to keep up appearances. Friends told her she looked fine and colleagues tired of hearing her concerns. She was baffled by her continued exhaustion, wondering if it was somehow psychosomatic, and galled by the “celebratory breast cancer culture, publicizing survivors engaging in physically challenging activities.”
Frustrated, Abel decided to investigate fatigue herself. Fatigue, of course, is a huge and unwieldy subject. There’s no agreed-upon definition, umpty-ump causes–from anemia to multiple sclerosis to traumatic brain injury–and many types. There’s the fatigue of ordinary life and pathological fatigue; acute and chronic fatigue; mental, physical or emotional fatigue. Any book on fatigue is an ambitious undertaking.
Abel’s work stands out as one of the first to tackle the nature and representation of fatigue itself, presenting an absorbing, incisive cultural history. What is this amorphous thing called fatigue? How have medical and cultural ideas of fatigue evolved? Interwoven with her own fatigue story, she elucidates this history and how our understanding of fatigue may, finally, be changing.
To those with contested illnesses, Abel’s story is all too familiar. It’s not surprising that as she searched for understanding, she turned to the literatures on pain, and on other fatiguing illnesses, such as ME/CFS and Gulf War Syndrome, to find parallels with her own experience. As she observes, “...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.”
As she delved into the historical and personal literature of fatigue, Abel found three broad themes: the denigration or dismissal of subjective knowledge, the knowledge that each person has of his/her own body; our cultural emphasis on productivity and the work ethic, in which a person’s personal worth is often tied to what she/he can produce; and the dominance of triumphal narratives, in which “with enough grit, hard work, and determination, individuals can overcome any adversity.” Obviously, these cultural narratives work against any chronically ill person whose reports of fatigue are not backed by laboratory findings, whose productivity is limited, and who doesn’t get all better.
Abel describes the broad arc of the fatigue narrative, beginning with its first appearances in the medical literature in the mid-1800s, along with an emerging focus on neurasthenia, industrial fatigue, and battle fatigue. Close on the heels of diagnosis came the cures, everything from the rest cure to exercise, from home-made nostrums to amphetamines. By the twentieth century, vaccines and antibiotics bolstered the belief that disease could be overcome, and increased the marginalization and disparagement of those who didn’t recover. They must not want to. They’re just depressed.
The parallels with ME/CFS run throughout Abel’s book, from the poor fit between chronic illness and our western medical system, to the isolation of the ill when those around them fail to understand their condition, to how gender, race, or socioeconomic status can impact disease perception. Her section on ME/CFS mostly gets it right, sketching the ways a psychiatric interpretation of ME/CFS has harmed patients and hindered research progress. She mentions the 2011 PACE trial that touted graded exercise therapy and cognitive behavior therapy for CFS, and the study’s debunking by journalist David Tuller and others; the Institute of Medicine’s updated clinical case definition for ME/CFS in 2015; and recent patient activism, such as Jennifer Brea’s video, Unrest.
Like so many stories of illness, the fatigue story is one of myth-busting, fueled by committed patient and medical advocates, the disability movement, and a growing body of new research. After almost two decades of struggle and confusion, Emily writes: “Finally I learn that as many as 25 percent of the women who undergo surgery, chemotherapy, and radiation for breast cancer experience fatigue at least ten years after the end of treatment.” Once Abel understands the long-term nature of her fatigue, and the likelihood that a full recovery may not happen, she can finally listen to her body and do what’s best for her. “Once I abandoned my quest for a cure, I realized that my primary task was to learn how to manage exhaustion in a society that places a high value on personal energy and productivity.”
While the fatigue story is still in its infancy, Abel claims that “medicine has begun to place fatigue on its research agenda, slowly and somewhat haltingly acknowledging that the condition is far more serious and prevalent than widely assumed, highlighting the difference between chronic and acute fatigue, and searching for both diagnostic criteria and treatments.” Let’s hope so. Abel’s book should help.
Dorothy Wall (www.dorothywall.com) is author of Encounters with the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome (Southern Methodist University Press), and the poetry collection, Identity Theory (Blue Light Press). Her latest piece “The Importance of Listening in Treating Invisible Illness and Long-Haul COVID-19” appeared in the AMA Journal of Ethics.
She has taught poetry and fiction writing at San Francisco State University and U.C. Berkeley, Extension, and works as a writing coach in Oakland, California.