Finding a Name for Fatigue

it's the Progressive Era again?! plus: a few of my low-energy recipes for cooking thru it

I’m sitting on an old, lumbering B train, on the way home from an attempt to make a new friend. This year I am committing myself to the tedious work of queer community-making — which is really just meeting, talking, and getting-to-know — but I had to cut this one short at 8 PM, because I started losing words.

The train car is empty and bright, and I am staring into a stained orange plastic seat, studying how the light bends across it. There is something about fatigue that makes you present. It’s like pain, in that way. I can’t worry because I can’t think; the part of me that ruminates doesn’t have enough fuel to spin up. I’m just here, bone tired.

It’s not a phrase I understood before now. Soul gone away, so tired that all you can feel is your own bones.

That thing Elaine Scarry said, about pain being unshareable, and how that makes us doubt each others’ pain. You can’t feel my pain, so you’re not sure it’s there. Fatigue is like that, too. When people ask, how are you? and the honest answer is, so tired — nobody cares, everybody is tired, and they didn’t actually want to hear that.

My tired is just the bone kind, the stuck-like-a-magnet kind,¹ the kind that empties my head of all personality. It’s not very interesting.

People who push through their tired, on some level, assume that others should do as they do. This is because their reference for tired is theirs, and if they’ve never felt my tired, they can’t know it. So the chronically tired become lazy and suspicious. Their tired must be for attention, for feeling special.

But fatigue does not make you feel special at all. It makes you feel like nothing.

The historian Emily K. Abel had such a hard time finding research on fatigue that much of her book Sick and Tired focuses on the adjacents — pain and depression. While they often go together (certainly for me, they do),² Abel writes that pain is taken more seriously than fatigue, so some don’t even mention the latter when they see their doctors. But even so:

“Studies report that physicians believe that between 30 and 40 percent of their pain patients are ‘probable malingerers.’”

Part of this is because chronic pain and fatigue patients don’t show outward signs of their ailments:

“What the writer David B. Morris found most surprising when he began research at the pain clinic at a large university hospital ‘was the apparently normal faces of the patients.’ He had ‘steeled himself to expect agonized expressions and frightful cries.’ Instead he found people who ‘thumbed through out-of-date magazines or sat quietly.’”

When something hurts all the time, you learn how to carry it around with you.

In the US, fatigue has generally been viewed as a problem that can be fixed through exercise, diet, and especially, rest. Progressive Era reformers used research on fatigue in factory workers to argue for a shorter work day, on the grounds that rest would lead to greater productivity.

Abel points out that similar arguments are still being touted today by productivity gurus and corporate types. I typed ‘fatigue’ into YouTube and found:

1. a psychiatrist claiming that tired is an emotion which the brain defensively creates to keep you from doing things that seem like a waste of time

2. a functional medicine quack claiming you’re tired all the time because you eat too much ultra-processed food

3. a journalist claiming that you’re always tired because your ‘caveman brain’ can’t handle all the decisions you have to make in the hectic ‘modern world’

That last one is an evolutionary twist on the Progressive Era’s diagnosis du jour, neurasthenia, an illness mostly applied to white professionals whose nerves had been supposedly frazzled by the frenetic pace of American city life. For the neurasthenics, rest (and sometimes, moving to sunny California) was the answer.

Chronic Fatigue Syndrome resists this, however — ‘unrefreshing sleep’ is one of its defining symptoms. Many sufferers want the disorder to be renamed, because the word ‘fatigue’ is so easily dismissed. The Chronic Illness Inclusion Project prefers to use the term Energy-Limiting Chronic Illness, which applies to everything from fibromyalgia to POTS to Long Covid.

Living with an ELCI means never really knowing how much energy you will have on any given day, and it also means paying for pushing yourself too hard — what is medically known as ‘post-exertional malaise,’ but which the Chronic Illness Inclusion Project casually refers to, simply, as payback.

literally me trying to make new friends [source]

A 2015 report by the Institute of Medicine recommended renaming CFS to ‘systemic exertion intolerance disease’, a sort of course-correct in CFS research after the controversial PACE trial in 2011, which recommended graded exercise and cognitive behavioral therapy as treatment.

It was based on the idea that CFS patients had an irrational fear that exercise would make their symptoms worse, which caused them to avoid it, thus becoming a self-fulfilling prophecy. Patients were immediately pissed about this, because it completely disregarded their experiences. It wasn’t an irrational fear — exertion of any kind caused their symptoms to get much worse.

The issue, Abel writes, was that the medical establishment did not view patients’ experiences as a valid form of knowledge.

Julie Rehmeyer wrote in STAT about the fight to get access to the study’s raw data, which took five years. When it was finally released, researchers and patients discovered huge flaws in the study’s design — what they had claimed was a sixty percent recovery rate with graded exercise and CBT was actually more like ten.

Chronic illness threatens the power of medicine to cure, Abel writes, and this partly explains why people with chronic conditions have historically been shipped off to institutions, or else dismissed as fakes and liars. For over a hundred years, Americans have been taught to believe that every health problem — even cancer — can be solved through hard work and wise choices:

“By the 1930s, when approximately four-fifths of cancer sufferers still died of the disease, a massive health-education campaign promised that cancer would not kill anyone who remained vigilant and reported all suspicious signs to doctors. An article in the American Journal of Nursing encouraged nurses to convey “the message of hope and cheer that early cancer is curable and only neglected cancer is incurable.” The title of a widely distributed ASCC film proclaimed Choose to Live, implying that the outcome of disease was entirely under individual control.”³

This is a bunch of capitalist bullshit, yes, but I also see it as a cope for the terrifying existential truth that our bodies can betray us. The not-yet-disabled accuse the chronically ill of falling prey to limiting beliefs, without ever examining their own defensive beliefs — that the body is controllable, and everything can be cured if you just try hard enough. These beliefs are wrong, and they hurt people, but they help the not-yet-disabled sleep at night.

I don’t have a good name for my fatigue yet, but I am learning how to carry it around nonetheless. Abel, who was inspired to write a history of fatigue because of her own experience after chemotherapy, writes that questions of what caused her fatigue, and how much of it is psychological or physical, matter less since she began studying the work of disabled scholars:

“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. People with a wide assortment of diagnoses, including multiple sclerosis, rheumatoid arthritis, chronic fatigue syndrome, and fibromyalgia, as well as those recovering from serious surgery, have taught me how.”

Behind the paywall this week: my struggle to keep cooking through fatigue has led to working out some low-energy, one-pot, highly customizable recipes, a few of which I will share with you now (in the hopes that you will also tell me yours).