This Is Us

We Live in an Economy of Pain

I work so the medical industry will prescribe something so that I can do more work

Pain organ — MAS, graphite, paper, multimedia

“for what is quite literally at stake in the body in pain is the making and unmaking of the world.” (Scarry, 23)

Above is one of several sketches I made during a particularly bad flare-up. Delirious with pain and exhaustion, I decided that there must be a pain organ somewhere making all this pain. If I could just turn it off or find someone to remove it, the pain would end.

But when I tried to picture it, to draw it and describe it, it got bigger and bigger until it exceeded the body. It exceeded grammar, too, so this is all I could write:

  • the pain organ sits in the head
  • the pain organ is bigger than the head
  • blebs out (maybe it glands) of its pouch
  • casing
  • smothering over skin tissue
  • body parts pain
  • a greasy membrane that filters, throbs
  • a swallowed tantrum of fluids
  • skin, tissue, the nerve
  • the nerve

In 2013, an article appeared in the medical journal PAIN detailing a breakthrough in neuroscience that finally described the physiological mechanism behind fibromyalgia pain. What this article makes clear, though, is the consistent assumption that what these women were feeling wasn’t “real” or “rational” until neuroscientists discovered the physical mechanism behind it using biomedical instruments (genetically engineered mice, MRIs, blood tests, etc.).

Patients already knew the pain was real, but this discovery is proof that, before it, doctors didn’t fully believe them. There is a long history of women’s pain and ailments being reduced to “psychosomatic” (look up the history of “neurasthenia” for just a taste if you want to know more) or “all in her head.” This is just “female hysteria” all wrapped up in a postmodern package. Here, we’ve gift-wrapped your pain in science and medicine and are selling it back to you in its legitimate, rational form. You’re welcome.

When I began seeking help from doctors for my mysterious symptoms (most of which were invisible, incapacitating pains), my brother, an MD, told me which symptoms to report and which to keep back in order to avoid a “trash can diagnosis” like fibromyalgia. In other words, for my doctor brother and his colleagues, fibromyalgia was simply the diagnostic trash can they threw people, mostly women, into when their symptoms were as nebulous as pain, and signs of their illness were invisible to doctors, lab tests, and imaging technology.

Doctors’ logic is that patients lie; lab results and imaging don’t. Of course, we know that’s not true either. Lab results are often inconclusive or simply false or they don’t give enough of the picture. For example, although RA factor is tested to determine if a patient has rheumatoid arthritis, 15% to 20% of patients with RA test negative for RA factor, according to Johns Hopkins Medicine. Imaging is often misread by technicians and radiologists, and some tissues are invisible to certain types of imaging.

After a brief remission last fall, I had a pretty terrible flare. The pain was exquisite. (I love that description of pain — as if this particular pain was a masterpiece, a perfection of pain, a fucking Mona Lisa or a three-star Michelin dinner.) I felt like I had the flu, like my bones were breaking. I lost 15 pounds in a month. I had been trying to grow my hair out from a pixie cut, but it would break off somewhere around my ear lobes. I’ve always had thick, wonderful hair, the kind often described as “luxurious,” but it was suddenly sickly too.

For a moment, I felt lighter, brighter, but the pain was still attached to me. Maybe I should have performed some ritual with the cut-off hair, buried or burned it. Maybe I didn’t do enough — that is always the next thought: What could I have done differently to keep the pain away? Or maybe the story I was telling didn’t have an ending (no burning or burying, no ritual), so it keeps going.

“Pain isn’t real; it’s just an electrical signal sent from an injured part of the body to the brain.” This is the mantra (or some variation of it) that self-help books tell us to repeat to remind ourselves that the terrible, mind-altering (literally, physically mind-altering) pain we are suffering is not really real pain (by which they mean the pain from an acute injury: a cut, a broken bone, a burn, a heart attack), but only a message we can choose to ignore. But what if it is “real?” What if it is another sense, like vision, that feels something out there or in here that we can’t sense in other ways? A sense for violence. A sense for things that break and cut, burn and penetrate. A sense for things that are breaking in a way we can’t sense otherwise. What would it feel like if the liver was trying to communicate that it was processing too much insulin and failing?

Pain is the sense for things that are breaking or being broken, which is happening all the time around us and to us, inside us.

We can only talk about pain in terms of itself because there is no language for pain outside of pain. The pain itself is a sense, a feeling that we don’t recognize like seeing and smelling and hearing. Instead of sensing light or chemicals or audio waves, pain is the sense for things that are breaking or being broken, which is happening all the time around us and to us, inside us. Maybe we are feeling the pain of things breaking out there as well and instead of listening and changing or understanding, we ignore and control.

Pain — has an Element of Blank —
It cannot recollect
When it begun — or if there were
A time when it was not —
It has no Future — but itself —
Its Infinite Contain
Its Past — enlightened to perceive
New Periods — of Pain.
Emily Dickinson

Anyone who experiences pain knows this: Pain is real. As real as every other signal we receive and sense we have. Vision, hearing, smell, taste, pain. The world and our bodies are telling us something, and we have chosen to numb the message rather than see the broken and breaking things that are creating the sensation. Sometimes these are things we cannot fix: an abusive sexist boss, toxic racism at work, backbreaking work at a thankless job, the pain in our leg that doctors tell us doesn’t exist so we just keep going. The pain of loneliness (social brokenness), of microaggressions, of powerlessness, of discrimination, disappointment, and loss.

But pain is only legitimate and rational if it can be seen by doctors either directly or through instruments (MRI, X-rays, lab tests). Although these other pains are beginning to show up in statistical analyses, they still can’t be made visible by an individual patient to the gatekeeper of treatment and cures: the physician. They can only be seen at the statistical scale level when it is already too late.

Anyone who suffers from depression knows that it is its own pain, but we don’t categorize it this way. It is a mental illness. A chemical imbalance. Even though depression has been linked to inflammation, our medical institutions are heavily invested in separating what it sees as two distinct forms of pain: psychological (usually in terms of psychosomatic illness or “not real,” “only in the mind”) and physical (which simply means that it has been tied to a bodily function or dysfunction and, more importantly, another illness that is testable) — despite growing evidence that illness/disease and its causes extend beyond the body to environment (see stress, powerlessness, and poverty as links to disease) and all of its effects on the body, including psychological.

The word usually used as a sort of stand-in for this constant pressure (physical, psychological, emotional) is “stress.” But that word, like pain, is rarely defined and has no referent. It is the nebulous thing “out there” that pushes the body beyond its limits, and the body responds with pain. It is the thing we are told to blame for our illness and pain, the thing we are expected to control, eliminate, relieve ourselves of.

In medicine, stress is actually about a physical response, but when physicians use the term, they are talking about something external to the body, something to blame for the state we’re in. Something we should learn to control. You can see the problem here.

The stress we feel is caused by external pressures (racism, sexism, unemployment, financial problems, etc.), but we are expected to control our response. No one suggests changing the system — this is America after all, home of the individual and the self-help empire. Pain constantly asks the question, What is wrong out there? In here? While the system says, What is wrong with you? Likewise, we quickly learn to ask not What is hurting me? but What is wrong with me?

If we are supposed to ignore our pain, or chant it or yoga it or organic food it away, why is so much money and effort in our culture spent on producing, acquiring, consuming, and regulating painkillers and criminalizing those who use them? I am not just talking about NSAIDs and narcotics, but other traditional painkillers we place in different categories: cigarettes, alcohol, marijuana, “controlled substances.” And why are we not allowed to treat our own pain and decide its limits? Many OTC painkillers — especially acetaminophen, which was responsible for around 1,500 deaths from liver failure over the past decade — can be terribly dangerous. But it’s only certain painkillers the government has an interest in — those that actually reduce pain and invoke, in some people, temporary pleasure. It’s no coincidence that narcotics are also very profitable. People have always been and will always be in pain of one kind or another.

One of the ways I control my pain is through diet and supplements and, yes, I do some yoga and even qigong. It has reduced my pain load, but not enough, and it’s unreliable. I can do everything exactly “right” and have a flare anyway. But I continue to adhere to an incredibly restrictive diet (SCD, which was designed for autoimmune diseases like Crohn’s, ulcerative colitis, and for children with autism; it’s like paleo diets only more restrictive). I continue to hope it will work, but more importantly, it makes me feel like I have some control over the arbitrary weather of chronic illness and pain.

And there’s another benefit I try not to think about: Physicians, colleagues, and family members treat you differently when they learn you are willing to resort to extremes to control the disease and pain they’re not really sure you have.

We are not allowed to treat our own pain.

The fact that you are willing to do such things (things they would never be able to do, like giving up cake and pizza, sugar, alcohol, ice cream and soda!) makes it more believable that you must actually be in pain. It legitimizes your pain in the same way smoking, being overweight, being a woman, being a BIPOC, being queer, drinking alcohol, asking for opioids, etc., delegitimize it.

We are not allowed to treat our own pain. The strangeness of this hits me every once in a while. That I must go to an office, pay a ridiculous amount of money (and pay for health insurance in the first place with work and with money), and hope this person believes that I am in the right sort of pain and not just seeking pills. Then I must pay for blood tests and possibly imaging, receive some sort of diagnosis/judgment simply to get a prescription for pain medication, which I must take somewhere else to have filled and pay yet again.

In Kentucky, it was even more complex. I had to undergo a drug test yearly simply for the state to allow my doctor to write a prescription for me to take two tramadol (non-narcotic) a day. I had to beg and pay someone else to give me the tools (always inadequate, always at a price in money and side effects) to get the minimum dose of what is considered by most doctors an inadequate painkiller — and that was just to get the pain to a level at which I could function. And by function, I mean work.

I had to work to get the medical industry to give me a prescription for the thing that allows me to do more work. This is the pain economy. But this is only a part of the pain economy.

Pain is not neutral; it is not politics-free. Pain is classist, sexist, and racist, homophobic and transphobic. So is the regulation of pain medication. We have infected the world with our drive to control painkillers (not pain, you’ll notice; there is never a war on pain). In the “developing world” most of the people who need pain meds can’t get them thanks to our war on drugs, which is largely a war on opiates, which are cheap and easy to produce. Our pharmaceutical companies, our medical NGOs, want to control the supply, to create scarcity and therefore profit.

We deny the sick and dying pain meds, leaving them to suffer in agony in the name of protecting them. It’s always “for your own good,” when there is profit to be made. That word “good” can also mean profitable, and as a noun, it can mean a commercial product, something produced for sale. We are the good. Our pain is the good.

They have succeeded in taking our pain from us and commodifying it. We no longer own it. We can barely claim it as ours even when it is suffocating us. It is something that happens to us, that we need help controlling. Something we cannot perceive for ourselves. Pain requires an expert to validate it. They can relieve us of it at great expense — or not. When we try to relieve it ourselves, we are criminalized as if we have stolen something. As if our pain is their property (like our work is) and something we have no right to. Something valuable we can’t be trusted with.

We are consumers of pain. Our labor produces more of it. It is stolen and sold back to us. The pain of people in other countries produces our products; it’s embedded in our economy. We are an entire world economy of pain.

There is research for imaging pain, making it something that can be seen by others, but why would we need this if doctors believed patients? If we believed everyone who told us they were in pain. The idea that people with addiction are not in pain but simply pill-seeking is incredible. A person can be seeking pills, can be an addict, and also be in ferocious, world-ending pain. Many studies show that addicts are addicts because they’re treating pain with whatever they can find: social pain, physical pain, psychological pain.

Experts use blood tests and imaging to tell us what our bodies are already telling us.

There are no words for pain because pain itself is a form of communication: the body trying to tell the self/consciousness something urgent. It can’t be communicated because it already is communication, but in the words and grammar of the body, which can’t be translated—or maybe we have forgotten how.

We seek out experts to translate our pain to us. Experts use blood tests and imaging to tell us what our bodies are already telling us. These stories are well known and rational. They have treatments but no cures. These stories are supposed to have endings — happy endings. But the body keeps telling us and nothing will shut it up. Sometimes it tells us to death.

What I know from my own pain is that this story we have been telling ourselves about our bodies and how they work and don’t work is not true. If you’ve read Foucault, you know that medicine is a way of looking at and understanding and controlling bodies. Medicine makes its own knowledge or stories about how bodies work, how they don’t work, and how to make them work again in a way that is productive. These stories are usually very linear, very straightforward, rational: Something happened to you/you did something > body is damaged > diagnose cause of damage > treat disease/damage with some chemical, surgery, or treatment > cure.

All of this assumes that what we understand as “healthy” is normal. That normal is normal. Without normal, illness doesn’t exist. Without the blank slate of no pain as a starting point, pain is meaningless. But of course, it could be the other way around: Pain is the only meaningful communication, and we are taught to ignore it.

The thing I’ve discovered since finding out I have an endocrine disorder is that the body doesn’t work at all the way we’re told it does. That story of cells and organs telling other organs what to do and when (like little individuals making rational economic choices) is fiction. These systems (glands in the endocrine system, the brain, etc.) are all entangled in feedback loops. The pituitary does its thing, making the proteins, hormones, enzymes, and other chemicals it makes with what’s available. Those chemicals are then taken up by other glands that make their own things. If there’s too much of one thing, the other gland will make more of whatever it makes because it has more stuff to make it with, or sometimes this will indicate a threshold and it will make another chemical that another gland uses to make a chemical that causes another gland to make less of something else.

No cell or gland is sitting in the body sending out orders to other glands to make more or less. There is no hierarchy. There are just entangled systems interacting. We can affect these systems indirectly by putting different things in our bodies (food, supplements, drugs, exercise, toxins, poisons), but when you’re dealing with entangled systems, there is no straightforward way to fix anything.

The world of medicine clings to this story of cells and organs—even when our bodies are telling us that pain and chronic disease extends far beyond the body into food, culture, environment, politics, work. The coronavirus pandemic has made this an obvious reality. The coronavirus pandemic has made this truth an emergency.

This is what pain is: something that is happening to you.

Patients on medical TV shows are not human. Patients are there only as a mystery to be solved by torturing them with invasive, violent “tests” (House) or as lessons for doctors to learn (Grey’s Anatomy). House’s constant refrain, “Patients lie,” seems to be the overarching narrative for medicine. Only patient bodies, divorced from their messy selves, probed by instruments, translated by physicians, can reveal the “truth,” and only via physician expertise. No one ever asks if the physician might be lying.

When you are in pain, you are no longer the subject; you are the object. Pain makes us objects and unreliable narrators. But this isn’t a truth; it’s a construct. Someone benefits. Someone profits. This is the pain economy.

If pain is another sense, then there must be a pain organ that can be located. That organ seems to be the brain; although sometimes I am sure that the pain organ is outside me, somewhere I can’t see. The pain organ is out there, sensing things I cannot, sending me overwhelming, terrible signals I can’t interpret or understand. The pain organ is not just in the body, but in the culture, the media, the economy. The pain organ tells us what pain is, what is painful, how to be in pain.

The chronic monthly pain of menstrual cramps is ignored, or worse, by physicians. Despite my diagnosis of endometriosis and two laparoscopic surgeries that did nothing but verify my diagnosis, neither my OB-GYN nor my general practitioner will prescribe pain medication for menstrual pain. Is this where my body learned to do pain so well? So well it can’t stop? Why would you stop doing something you were so good at? My body is a pain expert. My body is a pain machine.

To talk about pain, we have to refer to some other pain — one that is easy to picture and usually involves a tool or weapon, like a knife, axe, or hammer. To talk about pain, we have to distance ourselves from it, separate via violence. Pain is happening to us rather than something our bodies are doing.

I have chronic pain and a chronic illness. I actually have several chronic illnesses (celiac disease, Addison’s disease, endometriosis), but the “underlying cause” is still undiagnosed, so my pain is questioned, interrogated.

But what if pain is another sense we never learn to understand or interpret? Maybe all this is sensory information about something “out there” that our other senses can’t perceive because of distance, or time, or dimensions. Maybe something in our environment is “pushing” on this pain sense that lights up, but doesn’t explain. Our minds, used to the dull comfort of painkillers and analgesics, can’t translate the communication. That sense, that information, is lost to an amorphous, terrible presence that won’t let go. A ghost is warning us, yelling at us, but we don’t understand its language.

I try to come up with a description of the pain in my feet without using a metaphor for a physical attack or accident, the typical ways of explaining pain (sharp, stabbing, burning). I finally find its description in another pain: that glowing, aching burn after a day running and falling on cement as a child, catching myself with bare hands. Feet and hands throbbing at different frequencies whether or not there is a visible abrasion, the skin screams, the tissues yell, but only in a voice I can hear. A memory only I can access.

When I lost most of my sense of smell, I began to realize that things I thought I could still smell/taste were actually memories. I was tasting a memory of guacamole, not the guacamole in my mouth. Maybe pain is a memory too, always past tense coming into the present to tell us how to feel about something.

Pain is a story that needs telling. Who will tell it?

Pain is a story. Who is telling it?

Pain=surplus powerlessness

Pain is shameful, a sign that we have done something wrong, allowed ourselves to be harmed or harmed ourselves directly (cutting, smoking, “overeating”).

Pain cage — MAS, graphite, paper, multimedia

We are all filtering pain all day long. Which pain should I react to? Which pain do I ignore? Which pain will soon be too big for me to see and function around? This is potentially a life-or-death question we answer minute by minute. What if it’s a heart attack? A lethal situation (fire, poison, violence)? The pain organ reacts to each pain as if it were the same level of danger. The pain organ, like the thalamus or thyroid, takes what’s there and makes what it makes: pain.

I feel like an expert now. As I stumble and zombie my way through the daily, I see others for the pain they’re in. The checker at the grocery, who keeps shifting her weight (she’s forced to stand the entire time), touching the small of her back, aggressively ignoring customers as she tries to make it to the end of her shift. The middle-aged woman who limps just a little, whose smile looks forced. The wince as she leans over to pick up a bottle of vodka, then the inevitable smile and joke as she tries to make light of the fact that she is buying alcohol too. The women who work at the laundry around the corner from us who take breaks on the wall outside to smoke and make cruel jokes about my fat dog before waddling on painful hips back to work.

It’s difficult to write coherent sentences through and around the pain.

There is a relatively new movement in medicine, illness narratives, which is also the oldest movement in medicine. It boils down to listening to the patient’s story. Not simply as a way of gathering information and translating it into medical jargon and insurance codes, prescriptions and pills, but also as a way of allowing the patient to control their own narrative. That this narrative, generated by the patient with the doctor, is an essential part of healing. By listening to the body and telling its story (with the help of a physician who can add to that story with their expertise), we participate in what is an essential part of healing. Bodies need more than to be acted upon.

There’s no personal agency in pain.

We talk a lot about agency, but there is no agency in medicine. And if there is, it is always the property of the physicians who insist it is the property of the hospital and insurance companies, who insist it is the property of profit. There’s no personal agency in pain.

When I was in graduate school, I changed my PhD topic to autoimmune disorders because I was spending so much time researching them to figure out what was wrong with me. But the more I learned about autoimmune disorders (the useless treatments, the disregard of patients, the victim-blaming), the more I wondered why I was trying so hard to get diagnosed. Autoimmune disorders are, as a category, terribly misunderstood and maligned because our understanding of the immune system is not an understanding at all. We barely understand how it works, including the inflammatory process.

The narrative, the metaphor for autoimmune disease, is that the body, for some reason, turns on or “attacks” itself. Which is a strange metaphor because every time the body fights off infection, it turns on itself. Cells of the body that have been infected are destroyed. Autoimmune disorders are really just the immune system doing its job too well. In my case, it sees infection everywhere and reacts accordingly, appropriately. Maybe we need to expand our ideas about what can “infect” us beyond viruses and bacteria. Why do we trust what our own bodies are telling us less than we trust a medical system that sees us as products, as clients who lie?

An infection is a foreign body that has entered our body and reproduced itself. This is a familiar narrative, similar to possession by spirits. Now we are possessed by bacteria, viruses, fungi, and our own rogue cells (cancer, autoimmune disorders).

When my wife was in medical school, we took another look at my records and discovered that I had been diagnosed, but because of the way diagnoses are created, no one had noticed. For some reason, a rheumatologist at Cleveland Clinic had tested me for a rare genetic disorder called Muckle-Wells. It’s caused by a defect on a gene responsible for the inflammatory response, the same set of genes involved in disorders like familial Mediterranean fever. I tested heterozygous, which means that I have only one bad copy of the gene, one error. At that time, a diagnosis of Muckle-Wells required a homozygous result — both copies must be defective. But the diagnostic criteria changed about a year after I left the clinic.

If I had been homozygous, I would probably have not survived infancy, and if I had, I would have been deaf by my teens and dead from amyloidosis in my twenties. Instead, I have the less destructive version, which means that my flares, which can be caused by cold or almost any stress, including illness, feel like I’m getting the flu. I can have fevers or just an elevated temp, extreme muscular and joint pain (if you’ve had the flu, you know what I mean), terrible headaches that aren’t migraines but are nearly as painful and debilitating, a weird rash. But doctors really don’t know much about the disorder or how it is expressed in people who are heterozygous. In fact, it’s so rare that I can’t find a physician who will treat it. I now have a diagnosis — but that diagnosis has left me even farther from treatment.

We no longer make products at work; we make pain. Maybe we have always made nothing but pain — for ourselves and others. In hours of sitting or standing in debilitating positions, in mind-numbing boredom, and forced cheer. In textile mills and household drudgery, in hospital scrubs. We produce pain, and the pain capitalists profit from painkillers we produce and consume. They limit our access to pain-free space and pleasure while forcing us to reproduce pain.

Narcotics, sex, alcohol, prescription opiates, religion, and heroin are some of the only paths out of pain and into some place like pleasure. We live in a pain economy where we make pain all day long then pay to have it distanced, delayed. Pain is demonized, minimized, then normalized. It’s medicalized so that we can be told we are drug-seeking when we seek the condoned, licensed, capitalist-approved paths to pain-free space. But we need to be diagnosed, so we hope to make our pain visible, to make our pain worth something so that we can pay to enter the mythical pain-free space. We exchange our lives and hours for pain, hoping to redeem it for painlessness or maybe just pleasure which, despite what ads tell us, is never the opposite of pain.

Pain is the constant because we work at it day and night. It is only when we exceed our pain space, when we can no longer work to reproduce the pain of others by creating pain-saturated objects that are consumed by workers who must work more to buy them, that we are worthless to the pain economy.

We invade and colonize other countries, force them to adhere to our painkiller restrictions, force them to make pain in greater amounts, store it in banks, while shrinking the space that is painless, moving it farther and farther away. It only exists in the virtual, in media, the unreachable imagined space we are all dying to reach. A global Empire of Pain.

Work published at Tin House, Electric Lit, Hobart, The Offing, Future Fire, The Toast. I research for Roxane Gay. | melissamoorer.com

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