Leslie Jamison wrote in The Empathy Exams that she wanted a “pain so visible -- so irrefutable and physically inescapable -- that everyone would have to notice.” Lidia Yuknavitch wrote in The Chronology of Waterthat she “wanted to mark that hurt on the outside.” These are not descriptions of performative pain, this is the wish for a pain to be acknowledged, for proof of pain to be visible to the observer. Pain rendered plain to see on the outside.
I do not believe it to be a coincidence that both writers are women. Jamison mentions in her explorations of pain, that women are more likely to be given sedatives rather than the pain medication men recieve. I have never taken pain meds stronger than ibuprofen, though I have been given valium and xanax and told to drink some calming tea. Maggie Nelson, too, writes of the pain of women. In Bluets she says that a doctor told her women are more likely to downrate their own pain and have their pain not believed.
I have been accused, since I was a child, of faking it.
Maybe I was. Maybe I still am. I can look at the curves and planes and visible bones and muscles of my back and see the head of a rib pressed up against skin, rather than into my spine. I can see, plainly, the dislocated rib unleashing the fiery pain inside of me. I can show people this rib, they can see, too, that it is not where it is meant to be. A museum of medical oddities I carry on my back, and I can still think that I am faking it.
I was told, so often, as a child that I was carefully creating my pain, manipulating people for attention. I ignored a lot of my pain. These days, I barely wince at a dislocated shoulder, or a sprained knee (though I did tear up last week when I accidentally shoved my patella out of place.) There was the theory that no child, no matter how clumsy, could be injured so often.
Maybe I was faking it.
When I was nineteen, tired of my body falling out of itself, I wanted an answer. I was a collection of injuries and symptoms with no name, so I researched. I found myself in my doctor's office. After noting that “Yeah, something’s going on,” he sent me to a geneticist in the next town over. My body still falling out of itself, toothpick bones with joints held together by loose rubber bands.
I have Ehlers-Danlos Syndrome (EDS). Even doctors can think I’m faking, because I should be crying in pain, but it happens so often I’ve had the tears dry up. EDS is a genetic connectivity tissue disorder, affecting all connectivity tissue (eg. collagen.) There are around eleven subtypes of EDS, and I have hEDS: the hypermobility type. This means my more elastic than elastic tendons and ligaments are ill-suited to hold joints in place. A hyperextended joint (elbows and knees) is defined as when the joint moves backwards more than ten degrees. My hands fold in on themselves. My bones fall out of themselves. My sacroiliac joint (my biggest foe) angrily shifts and pops in my sleep, shoving a hip out that makes me unable to walk.
I'm not medically minded. I think of myself as a seventh grade science class skeleton that’s been around since the Eighties, joints falling out so often the teacher finally rubber banded them together and told the students not to touch. This skeleton, then, exists within my body. Muscles grazing over top of these angry bones and bands, sometimes helping, sometimes getting in the way. Skin on top of that. Skin, too, comprised of collagen and thus affected. I bruise at nothing, scar forever, but the medical term used in clinical diagnoses of EDS is “velvet soft skin.” You have to take the little wins.
It’s a genetic condition; I’ve had it since birth. My grandfather likely had it. My mother has a more benign form, not meeting the EDS criteria, not causing her pain. She does not dislocate or sublux or live her life in pain with a duffel bag full of braces. The child that I was did not want the attention that came with injury, I was just in pain. That’s a lie. I wanted the attention. I always wanted the attention, but the pain was not—is not—a lie.
I got worse at eighteen, wearing between three and five braces per day and taping the rest of my bones together. It’s degenerative. I could have a cane next year. Sheer stubbornness and denial the only reasons I don’t have one now. A wheelchair by thirty, maybe. Or I could never need one. It’s a crap shoot. For now, even in my neoprene armour of joint braces, my pain, my disability is invisible. Internal. My seventy year old grandmother once offered me a seat on the subway because I was standing on a subluxed hip, but I saw the looks I got and stayed standing.
I always did want that visible visceral pain. I have it. The pain. But not how I wanted it, I have an unsympathetic pain. A “can’t you just suck it up and walk, it’s not that far,” pain.
The reification of pain. A reasoning, a proof of its existence. A source code for trauma and pain. The sympathy. The empathy. The way to signify what you have been through, are going through, with one sentence: I was raped. That real pain, tangible only in flashbacks and fear. No one can see the rape on you. You are not in a full body cast that people can see. No spectre hanging over your head, proving to others that you have earned your pain, your life.
In her book, My Body is a Book of Rules, Elissa Washuta writes, “I wanted to be raped, too, so people knew my pain is real and rooted.” And then, “Later, after I learned how painful it is to truly crack, I stopped wanting my life to merit a heartbreaking Oprah book.”
I was raped.
I wanted trauma when I was a child, my best friend Antonia and I playing “orphans” in the yard. I wanted something horrible to happen to me to prove that I was “special.” In children’s books, there are awful things that happen to children: dead parents, stolen by fairies, curses. And then they get an adventure, they are special. I wanted to suffer to prove to myself, to the world that I was important, that I mattered.
I wanted to be holy.
I wanted to be holy and saintly. But young women saints like Dymphna and Maria Goretti would rather die than release their purity and I am no martyr. When I was eleven I was raped, still living, but an impure life. I buried those (yes, plural) memories so deep inside that I lost everything from sixth grade. It took until I was fifteen to get them partially back, and I am still left uncertain. I did not suffer my way into importance, or into holiness. I suffered my way into PTSD and repeating past trauma.
It’s solid trauma: tangible and complicated by memory, emotion, and societal stigma. PTSD sounds like a real thing that should get you help, empathy at least. But it’s real for people who are not me. I’m twenty. In college. I’m in a long term relationship but I haven’t gotten laid in two weeks because every time I try, I have panic attacks and my mind flees my body, thinking it’s protecting me, like it did when I was eleven. But there is no sign over my head saying, “This person has been through some shit, please respect them.” You won’t know unless I tell you, even if you do see the scars, the panic attacks, the dissociative episodes. Even then you might not believe me, I barely believe myself and I was there.
I was obsessed with my own pain. I wanted real grown up pain to prove my worth. I found it, but there’s a no returns policy in the terms and conditions I have never read.
I'm obsessed with my own pain and the invisibility of it. How one must take my word for my suffering. You cannot see my flashbacks like a tracheotomy scar. Please, take my word that my shoulder is dislocated, though you cannot see my scar. I have hospital visits, years of therapy, and a letter from my geneticist to back me up, but these are not stitched into my sweaters.
I have taken the invisibility of my illnesses, mental and physical, and transformed it into a pain of its own. I cannot walk for long but I am too young for a bad hip, so I cry on the sidewalk of downtown. I have had people discuss pedophilia in front of me as an abstract concept, ignoring that across the dinner table I had stopped breathing.
I cannot reify my pain, render the concept real. I am physically disabled but I cannot bring that hurt into the physical world. I want to mark this hurt on the outside and tattoo my pain upon the body that experiences it.