The experience of pain is both universal and specific. Your pain could have little to do with mine—let’s say you have IBS, or Huntington’s, or just a sprained ankle, while I am sitting here with my head hung low, the site of a migraine that’s lasted 20 years. I don’t know the horrors of urgently needing a bathroom or ceding your body to tics or wobbling around on crutches, and you don’t know how the sliver of light hurts, how the noise is infinitely louder and sharper in my ears, how the cotton fills my brain until I am low and dense.
Once this—my pain—is underway I fetch a glass of water and grab a box of sumatriptan injections. There are two per box; the rule is only to use the second if the first has not worked in an hour but that is a recommendation my pain overrules. I shoot two subcutaneous injections of sumatriptan, one of the few drugs which act on migraine pain, into my right thigh—never the left. My migraines are left-sided and they sublet that half of my body such that stimulation is unbearable.
Are we experiencing varieties of the same pain such that pain could be a way to compare our situations? Or is every instance of pain unique, so deeply rooted in the vagaries of our bodies that we can nod and agree but not get into gory details.
If, however, gory details are your thing, there’s no shortage of recent literature that delves into the experiences of chronic pain sufferers. Pain books are proliferating madly. Among new books, we see deep dives into specific illnesses, misdiagnosis memoirs, and narrative nonfiction that investigates how medicine has shortchanged pain patients. The lack of definitive answers or compelling theories about what chronic illness symbolizes resonates with the ramshackle parade of misdiagnosed, neglected, dismissed, and desperate sufferers dragging themselves through the pages of these books.
Fluency in pain doesn’t alleviate any ills, but it does provide a shorthand useful when communicating with the medical establishment. My diagnosis—chronic migraine—indicates I have at least 15 migraine days per month (my average is closer to 20). Those are the facts. But we still need a cold, universal way to express pain. The much-maligned pain scale goes from one to ten; every patient learns this early in their suffering and abandons it in the middle. Then there are the metaphors that connote some kind of invisible action: pulse, throb, ache, burn. We can’t see them, but we know those feelings. As I rose through the chronic pain world, making my way from ingenue to expert, I learned more sophisticated terms: imploding, face mask, skullcap, pain that is tamped down in one place and pops up in another. Call it whack-a-mole pain.
It takes a dogged investigator to uncover what’s going on in a body with a chronic illness—especially her own body.
Most pain is localized and easily explained: a bee sting, a sprained ankle, a sore throat, a bad back. For pain that is not discrete or cause-and-effect, vocabulary starts getting more elusive. Chronic illnesses are indiscrete: they come and go at irregular intervals, unleashing chaos and undoing easy definition and routine. To be chronically ill is to search for ways to explain living in a body that is hostile and cruel.
The most recent entry in the latest wave of pain books is Meghan O’Rourke’s The Invisible Kingdom: Reimagining Chronic Illness, which landed on the bestseller list the March week it was published. Illness, though, is culturally mediated, and a pecking order exists where cancer is more serious than shingles, but we still cannot locate where on the pain spectrum O’Rourke’s undiagnosed disorder belongs.
Chronically ill patients run out of words long before their pain ends. The words for pain are either quite general—ache, hurt, throb—or metaphorical like stab, explode or squeeze. Hearty, delicate, radiating, burrowing—we borrow words to liberally label our pain. Those words, however, often have a tinge of violence. Pain is a knife, a block of TNT, or a boa constrictor.
Where are the words devoted solely to pain? More importantly, where is the theoretical framework through which we could start to have discussions about pain that are not about drugs or death? Susan Sontag, the eternal queen of illness as metaphor, is probably the best place to start in terms of theory; while Elaine Scarry hangs out on the torture side of things (where Sontag also loitered in Regarding the Pain of Others, with Maggie Nelson’s Art of Cruelty close by).
It’s no accident that so many of our most interesting and ambitious writers write about pain: Leslie Jamison, Eula Biss, Esme Weijun Wang, and Sonya Huber all belong to this genealogy. If you asked specifically what these women wrote about, I could talk about Wang’s psychotic break, Biss’s too-true account about the pathos of the pain scale, or Jamison’s sweeping yet frustrating “Toward a Grand Unified Theory of Female Pain.” Given this constellation of works, my complaint is not that no one is paying attention to pain, it’s where their attention is concentrated: trying to balance medical jargon with a language of suffering that would describe pain in all of its glory and specificity. These accounts, however, are not usually critical. The reality and the imaginary of pain are still floating in the ether.
All chronic illness has an air of mystery alongside misery, but I am convinced mine should be much less mysterious by now.
That we lack the language to talk about pain is not a new idea: it is easy to trace back to the two patron saints of pain books and women’s suffering, Virginia Woolf and the aforementioned Sontag. Sontag’s Illness as Metaphor (1978) beautifully lays out the problem of finding language for pain, and Virginia Woolf’s On Being Ill (1926) is an impassioned and unanswered plea for a literature of illness:
Literature does its best to maintain that its concern is with the mind; that the body is a sheet of plain glass through which the soul looks straight and clear, and, save for one or two passions such as desire and greed, is null, negligible and nonexistent. On the contrary, the very opposite is true. All-day, all night the body intervenes; blunts or sharpens, colours or discolours, turns to wax in the warmth of June, hardens to tallow in the murk of February.
Woolf points to something some writers tend not to on their quest for clarity in writing our pain: bodies are opaque, unruly, sites of discomfort and agony, prone to keep you awake or conspiring so that you sleep through the best part of a day. That Sontag and Woolf remain paramount in the literature on chronic illness is because they were both sufferers and astute observers. Between them, there is a very fluent and compelling argument about how little control we have over our bodies, and how few words there are to narrate pain.
I find myself turning to language that is bland or metaphorical because it makes documenting pain less frightening. I am figuring out if it is possible to recount significant pain without an element of trauma; if I can describe what it is like to have a low dull ache take up residence in your head and decide to stay for 20 years. The impulse toward metaphor is so hard to resist: if I describe my pain as being like a knit hat three sizes too small you will understand that feeling. Thus I have transformed my pain, overwhelming and evasive, into a hat. What could be more innocent than that?
Another insider fact about chronic illness is when you are declared chronic, you become destined to forever wear the flimsy gown of the patient. You try to describe your pain such that it is the business of doctors, or acupuncturists, or shamans. To explain to these and other practitioners what it feels like—what I feel like—is to be a two-year-old screaming in a highchair who can’t reach the toy he dropped. We are so acclimated to the literature of suffering—sick lit or illness memoirs or pain procedurals—that we’re confident someone will understand how “it” feels if only we had the right words in the right context. That, to me, is hopelessly utopian: to have the language and to deploy it both feel many migraines away.
At the end of Woolf’s essay On Being Ill, she calls for a new literature of illness: “When we think of this and infinitely more, as we are so frequently forced to think of it, it becomes strange indeed that illness has not taken its place with love, battle, and jealousy among the prime themes of literature. Novels, one would have thought, would have been devoted to influenza; epic poems to typhoid; odes to pneumonia, lyrics to toothache.” Woolf has gotten her wish.
A brief sampling of recent pain books would include Porochista Khakpour’s candid memoir about living with late-stage Lyme disease, Sick, a book resplendent with hospital selfies and untrustworthy blood tests (2018); Anne Boyer’s shrewd and unsentimental account of breast cancer, The Undying (2019); Tessa Miller’s What Doesn’t Kill You (2020), a chronicle of Crohn’s Disease which also claims to be a self-help book for people dealing with chronic illness; Ask Me About My Uterus (2018), Abby Norman’s deeply felt account of her struggle to have her endometriosis diagnosed and treated; Sarah Ramey’s tale of serial misdiagnosis, The Lady’s Handbook for Her Mysterious Illness (2020), and Sarah Fay’s new book, Pathological, which chronicles her life through the lens of six misdiagnoses.
Emily Maloney’s recent Cost of Living relates how she repaid the debt accrued from her college suicide attempt by working in the health care system, documenting the financial disaster of chronic illness from the patient’s and institution’s perspectives. Maloney’s book is exceptional because of her shrewd choice to recast illness through the lens of money. Bad health is like buying a boat: it’s both a time suck and a ridiculously expensive undertaking that demands constant attention and expense.
The worst part of chronic illness is not pain, but time. Time is integral to how we measure progress and mark achievement.
Reading pain books over the 20 years of my illness, I often found myself in the perverse position of wanting less drama of diagnosis and more raw pain. O’Rourke admits her book is her attempt “to find language for a lived experience that in some ways resists description, to show how our culture tends to psychologize diseases it doesn’t yet understand, and to explain how and why our medical system, for all its extraordinary capabilities, is ill-equipped to handle the steep rise in this kind of chronic illness.”
This first half of her goal is important: language, pathology, and resistance all resonate with my experience of being a patient (and later on, an impatient). But O’Rourke’s book then tries to pick apart the many-headed hydra of American health care, which is doing an unsurprisingly lousy job at treating chronic patients. This really does not surprise or interest me. Having been a chronic patient under two different health care systems (American and Canadian), I strongly recommend not getting sick.
Right now, I feel ok. By the time you read this, however, I could be bedridden or couch-bound. I write my pain book in the moments I have tamped down my symptoms and I’m capable of high-level thinking and free of brain fog. Migraine is a constellation of symptoms that extend way beyond headaches. It is a disease of the brain, which is why so many other physical systems get involved. My migraines can include nausea and vomiting, with a side of dry heaves; chills and fever locked in battle, which means I am constantly putting on and taking off the same goddamned sweater; allodynia, the worst, a condition where I’m so hypersensitive to touch my hair hurts when I lie down.
I get an occasional aura where I see spots at the edges of my vision like a cartoon character struck by an anvil. And there is the headache, constant and demanding, pain simmering just below the surface or so sharp I scramble to get to a cold, dark place and plunge the needle into the flesh of my right thigh. I trace a small drop of blood and medicine that lingers on my leg. From this vista, my recent pain can be mapped: needle marks in various shades of pink and red on my right thigh are a constellation of migraines past and present. I find myself tracing lines between them as I wait for the rush in my brain that makes everything pleasantly hazy and dull, including me.
The worst part of chronic illness is not pain, but time. Time is integral to how we measure progress and mark achievement. Modernity relies on this fundamental optimism, that our best days are always ahead of us. Without this utopian idea, the future becomes dire. How can we live—why should we live—with nothing to look forward to?
Chronically ill people exist in this uncertainty that never becomes fact, an uncertainty writ large by the pandemic. Now healthy people know how we feel: afraid of plans, of special occasions, big meetings, vacations, parties, or obligations. There are many days where I look at my schedule, feel my pain, and start rearranging things so I can go back to bed. My migraines can last for months, and though after 20 years we are finally on intimate terms, there is little I can do to persuade them to leave.
Digging myself out of the rubble of my aspirations is a recurring theme over the last 20 years. Chronic illness has its tentacles in my moods, my sleep, my appetite. My level of enthusiasm for life is governed by the whims of pain. To write a pain book is to marry your epistemological experience with your psychological one. All chronic illness has an air of mystery alongside misery, but I am convinced mine should be much less mysterious by now.
But mysteries don’t behave that way, and neither does chronic illness. Neither are solved by a single episode, a single symptom, a clue. It takes a dogged investigator to uncover what’s going on in a body with a chronic illness—especially her own body. I do have the unlikely comfort of knowing that in the pandemic era everyone is unsure of what will happen to our suddenly fragile bodies.
I also take comfort in the fellowship of sufferers, though I am much more likely to pick up a book than to scroll through the many chronic pain feeds on Instagram. I write my book and look forward to the day I can shelve it in the pantheon of pain. As I meander through the banal landscape of the invisible kingdom, despair is everywhere; but people mutter about a new door, a new drug, some other way we might cure, or at least discuss, the pain that spurs on our wanderings.
See you in the pain section. I’ll be the one wearing black.