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When pain becomes an identity

feel your feelings

“What would it look like for your pain to take up space?” asked my therapist, rephrasing a question I have been asking about a thousand different ways, in conversations with most of the people I love, for at least eleven years.

I have been in pain for most of my life. I was diagnosed with scoliosis when I was ten years old. I wore a back brace twenty-four hours a day, seven days a week, for the next five years. When bracing failed to stop my spine from being crooked, I had spinal fusion surgery. I was seventeen, the summer before I started my senior year of high school. The goal was to make my back hurt less by making it straight.

But after my doctor drilled two titanium rods, six hooks, and eight screws into my now-straight spine, and I spent months getting better from a surgery that was harder than I could have imagined, my back did not hurt less. If anything, it hurt more.

I’ve spent the past four years trying to make this constant, intense, lingering pain disappear. It wasn’t until April of this year, though, that I saw a doctor who told me what I had known but refused to believe: this body was not going to get better. 

I can treat the pain, but I cannot make it go away. It is not temporary. It is something that is and will always be inherent to me—where this body goes, so too will this pain. It is not a condition; it’s an identity.

I spend a lot of time at Duke, inside and outside of the classroom, talking about identity. I study African American Studies and English so questions of identity—especially race and gender—are at the forefront of most of the classes I’ve taken. I am accustomed to talking about how an author or decision-maker’s identity impacts what they say and do, and how people of privileged identities so often do and say harmful, violent, and oppressive things as a result of their identification with an empowered identity.

I knew that identity is not always something immediately discernible by looking at someone, and that the only thing we can assume about each other is our complexity. That’s why introducing oneself with one’s pronouns is so important, why assuming a person’s race based on their phenotype is wrong, why treating everybody as if they are heterosexual, cisgender, middle-class, and do not have a disability is harmful. 

Even so, I’ve had a difficult time treating chronic pain as an identity. Am I a person with a disability, someone who “has a physical or mental impairment that substantially limits one or more major life activity?” Does it “count” as a disability, even if my ability fluctuates day-to-day, if I don’t have a specific diagnosis beyond the diagnosis of chronic pain, if my body looks like a body that doesn’t have a disability? If I were to say that I am a person with a disability, would I be appropriating the term, soaking up resources and attention that should go to people with “real” disabilities?

What would it look like for this pain to take up space?

I fear talking about chronic pain because I am still asking all of these questions. I don’t know what to call it, and I don’t know whether it matters what I call it. I don’t know how much of it to share with the people I love, knowing that neither they nor I can fix it. I fear this pain taking up space, even in the space of this column. At what point is it not worth talking about, since the only person whose life it will change is mine?

When I find myself going down that spiral—one of shame and silence—I remind myself that this pain has changed many lives alongside my own. It has changed the lives of my family, my friends, my partner. I wish it hadn’t. But it is always taking up space, even if I try to shrink it down to fit inside my body and my body alone.

I also remind myself that the world is not built for people with chronic pain. The world at large, and particularly the world of Duke, assumes able-bodiedness to be the norm as it assumes whiteness, assumes maleness, assumes a binary gender identity, assumes mental health, assumes wealth, assumes heterosexuality, assumes Americanness, assumes privilege. 

The fact that I can ignore most of the ways our world and our campus privileges “normative,” historically empowered identities, that I can opt-in to those conversations but exist mostly comfortably in my positionality, is a function of being white and straight and cisgendered and upper-middle class and passing as a person who does not have a different ability status. The world privileges most of my intersecting identities, so I am often granted the privilege of ignorance.

Chronic pain has added another intersection to my identity, one that reminds me everywhere I go that our structures—from how our buildings are built to how are classrooms are run—are not meant for people with disabilities. I cannot opt out of that conversation. Ability takes up space—in my life and in the lives of all of us—whether I want it to or not.

I don’t know what it would mean for this pain to take up space in ways that go beyond the space this pain takes up in my mind and in conversations with other people. I don’t know how to take up space in an intentional way, in a way that may make living in the world easier for me and for other people with chronic pain. 

But I’m going to keep writing about it, talking about it, treating it as an identity that intersects with all of my other identities and all of your identities, too. I’m going to let it take up space even when it scares me. 

I hope you will join me.

Liddy Grantland is a Trinity senior who relates really hard to hit classic “Titanium,” by David Guetta, featuring Sia. (Get it? Because of the rods? They’re titanium. The rods are.) Her column, feel your feelings, runs on alternate Mondays.

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