An infection is a foreign body that has entered our body and reproduced itself. This is a familiar narrative, similar to

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.

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.

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.

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.

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.

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.

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.

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.

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cades of my life, being an immigrant was my defining characteristic. The neighbors saw me as an immigrant. The other kids at school saw me as an immigrant. The officer at the unemployment office where I’d go with my dad to serve as a translator saw me as an immigrant. And coming home crying after getting my ass kicked after school only to have my mother tell me, “this is their country, not yours,” made sure that immigrant was etched deeply into my foundation.

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.

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.

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 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.

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.

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?