The Relentless Work of Being Sick
In late 1984, dozens of people in the region of Lake Tahoe, California, would go to the doctor with a variety of symptoms, including debilitating fatigue—the first clearly documented cluster of what the Centers for Disease Control and Prevention would label “chronic fatigue syndrome” towards the end of the ’80s.
Today, that complex condition is known as ME/CFS, or myalgic encephalomyelitis/chronic fatigue syndrome. In its more severe manifestations, it can leave people unable to get out of bed independently, needing to be tube-fed. Even in its minor forms, it can be life-altering.
I would know: I received an ME/CFS diagnosis in 2023. It’s not a rare condition—it’s estimated that around half of the millions of people with long Covid may have ME/CFS— but it is still widely misunderstood. Pushing oneself too hard to get “through” it, for one thing, doesn’t help build tolerance, and can instead lead to crashes known as post-exertional malaise.
Duke University cultural anthropologist Emily Lim Rogers looks at the labor it takes simply to exist while sick in her new book Sick Work: Exhaustion, Labor, and Invisible Illness, through the lens of ME/CFS. We spoke about the history of the condition, the importance of acknowledging differently racialized experiences of chronic illness, and the compounding exhaustion of being ill.
This interview has been edited for length and clarity.
How has debilitating fatigue been downplayed since the Industrial Revolution, and how does that connect to work?
In the US, we have an idea that it’s normal to be burnt out. Fatigue and burnout are systemically denied from workers’ compensation claims; this is actually not the case in all countries.
“Fatigue is this term that’s so banal and non-exceptional. We accept it as completely mundane and something that everyone should be: fatigued.”
The concept of fatigue was initially conceived of as something that could be solved, particularly in the context of an understanding of the body as a machine, in the late 19th century. Fatigue did not enter English-language medical journals........
