It’s defined as a lack of energy, but carries heavy emotional baggage in go-go, can-do America: If you’re fatigued, you’re weak. Lethargic. Idle. “Sloth” is condemned by the church as one of the seven deadly sins.
Today, as millions of people with “long COVID” report brain fog and exhaustion that linger months after “recovering” from illness, UCLA Fielding School of Public Health professor emerita Emily Abel chases the history of fatigue through the centuries in her new book, “Sick and Tired — An Intimate History of Fatigue.”
The book is informed by her own devastating battles with chronic fatigue in the wake of aggressive breast cancer treatment in the early 1990s, and the skepticism she faced for years from doctors, friends and loved ones who didn’t believe her suffering was real.
“People think that if there’s no medical explanation, there’s no medical problem,” Abel said. “Maybe there will be a medical explanation — at a later time.”
Doctors suggested she had Epstein-Barr virus, depression, post-traumatic stress disorder. They recommended psychiatrists, exercise, Chinese herbs, acupuncture. But those interventions didn’t help and she wasn’t actually depressed — just “inordinately tired.”
Medical science is waking up to this. Over the past decade or so, studies have found that up to 39% of cancer survivors experience severe fatigue up to nine years after cancer treatment has ended, and long after they’re considered cured. This fatigue “significantly affects quality of life” and mimics that experience of patients with the mysterious chronic fatigue syndrome, researchers said.
And since COVID-19 hit, researchers have found that, among hospitalized patients, 76% reported at least one persistent symptom six months after infection, and 35% to 50% of nonhospitalized patients reported lingering symptoms two to four months later.
The most common lingering symptom: fatigue.
“Long COVID is showing us that fatigue really is an important issue,” she said. “It’s been under-recognized, under-diagnosed, under-treated, and is a very common ailment of a lot of chronic illnesses. People think it’s trivial — ‘I get tired too.’ They really don’t understand what complete exhaustion, a fatigue that really is debilitating, is about.”
These days, COVID long-haulers, cancer patients with “chemo brain” and others with severe fatigue face a more understanding, but still rocky, path. Abel wrote with a sense of urgency to shed light on “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,” she wrote.
Tyranny of triumph
Abel, a historian of medicine and public health, traces fatigue from the “neurasthenia” physicians described in the 1800s — which apparently affected Charles Darwin, Max Weber and Virginia Woolf — to the “stress and burnout” seen in the bustle after World War II, affecting so many.
It’s been largely thought of as a temporary condition, easily amenable to a wide assortment of remedies, she writes. Those have included “rest cures,” exercise regimens, electrotherapy, caffeine, chemical stimulants and recommendations to get more sleep — always with an eye to boosting productivity.
Women have been viewed as less resistant to fatigue than men, and their complaints tend to be written off as psychosomatic. But it wasn’t always like that.
Before technology and diagnostic tools, doctors had to listen carefully to their patients’ reported symptoms to make a diagnosis — they didn’t have much else to go on.
But with the introduction of stethoscopes and blood tests, CT scans and MRIs, the patient’s account became almost extraneous. Abel calls that “the denigration of subjective knowledge” — and notes that there are no diagnostic tools to measure fatigue. “Without medical confirmation, we cannot convince others (and sometimes even ourselves) that our problems are real,” she wrote.
She calls out the tyranny of triumphal narratives. “When I finished my cancer treatment, I assumed my troubles were over,” she wrote. “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.”
Cope, not cure
Eventually — with the support of other survivors and fatigue-sufferers, not the medical establishment — Abel came to understand that her condition wasn’t going away.
Precisely why she was so tired? Was it caused by the cancer treatment she credited with saving her life? She accepted that she may never know — but that she did have to learn to live with it.
“With so many chronic illnesses, this is what people have to do — manage the chronic condition rather than looking for a magic pill that will cure it,” she said.
Once she began to think of fatigue as a disability she could manage, the questions about what and why and how she felt this way mattered less and less.
“Focusing on people’s everyday lives rather than on their interactions in clinics, doctors’ offices and hospitals, disability scholars have moved diagnosis from the center to the margins of the illness trajectory,” she wrote. “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.”
Early bed times. Frequent naps. An understanding of what saps her energy — lots of people, out-in-the-world stimulation — and what does not — sitting at her desk, researching and writing books. And yes, she has learned to be grateful.
“Although I’ll never know whether I had more chemotherapy than was necessary or even whether my exhaustion resulted from that treatment, I have always considered fatigue a small price to pay for the years when I have watched my daughters grow into wonderful adults, their partners enrich my life and their children become bright, generous and fun,” she wrote.
Physical imperfection is a condition of human life, not a cause for shame, she wrote. Disability arises as much from social arrangements and cultural attitudes as from physical impairments. And not everyone can be expected to overcome whatever adversity strikes them.
Researchers have finally placed fatigue on the research agenda, “slowly and somewhat haltingly acknowledging that the condition is far more serious and prevalent than widely assumed,” she wrote. Soldiers’ complaints about Gulf War syndrome were initially greeted with skepticism, but now are accepted; she hopes COVID-19 long-haulers are given credence. They’ll need it when dealing with employers, insurers and family members.
“At this moment in time, it’s imperative that experts listen to patients,” Abel said.
And as the population ages, “it may become increasingly difficult to sustain the fantasy that people can overcome any obstacles.”
Source: Orange County Register