When you’ve been in pain for a long time, you yearn for two things: relief and a story to explain your experience. After all, when you tell people you’ve been having joint and back pain for years, their first question tends to be: “What happened?” But for the 20% of Americans currently experiencing chronic pain (Hood et al., 2023), it isn’t always easy to answer this question. Many people’s pain remains “medically unexplained” (McNaughton et al., 2018; De Ruddere et al., 2016), while others have received a stigmatized medical diagnosis such as fibromyalgia whose etiology, definition, and treatment remain contested (Armentor, 2017). And even for those with a clearer origin story—such as an injury or a more well understood medical condition such as cancer—their pain may still have stuck around longer or reached higher intensity than it was “supposed” to without a clear medical explanation (Roy et al., 2022; Green et al., 2011). This means that often people with chronic pain are not only in unrelenting physical pain, they’re also forced to walk a confusing, twisted path through different doctors and treatments to try to understand why.
I myself have a few different, contradictory stories I could tell you about my pain, through three years tossed between the opinions of various medical practitioners, alternative healers, friends, family members, and even strangers. I could tell you that my pain was caused by micro-injuries, the shape of my spine, my frequency of sitting and standing, my nutrition, my hormones, my emotional trauma, or my cognitive distortions. These stories hold some truth, but they are also the types of stories that make other people feel safe from my pain. These stories fix chronic pain by its etiology in my body, my lifestyle, or my brain, so it can’t reach out and touch anyone else with its crooked, life-overthrowing finger. But I want to tell you a different kind of story today—one not just about me, but about the national and global phenomenon of chronic pain and how it concerns each and every one of us. This is a story that goes beyond pathology and etiology; it’s about how our bodies are trying to save us, and how we need to learn to get out of their way.
My first step away from these safe, isolating stories about chronic pain was to zoom out. I was prompted to do so by decolonial thinkers, whose work directed me to challenge individualizing stories with collectivizing ones (Sharma & Kivell, 2024). Looking to Indigenous thinkers, I was encouraged to understand people as interdependent and our pains as shared and to try to draw upon collective rather than individual action to address those pains (Kimmerer, 2024; Braxton et al., 2023). In examining chronic pain as a collective phenomenon, I saw a few striking things: massive numbers of people are experiencing it across the world (an estimated 27.5% of the world population; Zimmer et al., 2022), the numbers are rising (Zajacova et al., 2021), and the pain is unevenly distributed. Research into chronic pain in various marginalized populations has revealed that Black, Hispanic, and Indigenous people (Schubiner, et al., 2023; Hood et al., 2023; Antunovich et al., 2024), people of low socioeconomic status (Zajacova et al., 2021), LGBTQ people (Tabernacki et al., 2025; Zajacova et al., 2023), women (Zajacova et al., 2021), and autistic people (Han et al., 2024) all experience higher rates of chronic pain than their less structurally marginalized counterparts. This was most striking to me: chronic pain is concentrated in the bodies of the vulnerable. I wanted to know why.
There’s a popular story in public health literature to explain this. It’s called the Social Determinants of Health (SDOH) model, and it is used to explain the disproportionate prevalence of all kinds of health conditions among marginalized groups (Word Health Organization, 2025; Chen et al., 2024). According to this model, social forces (such as systemic racism) stratify the material conditions of people’s everyday lives—their access to resources and their exposure to stressors—which in turn stratify people’s health outcomes (Roseen et al., 2023). And when medical providers’ discriminatory biases also stratify the quality of the care they provide, this makes the disparity even worse (Schubiner et al., 2023; McLaughlin et al., 2025). All of which leads to the type of demographic breakdown you see with chronic pain: the already marginalized suffer the worst.
This is an important story. It refutes the prejudiced inclination to blame marginalized people for their own health problems, instead pointing the finger at the material conditions created by oppression. I like the SDOH model quite a lot for this reason, but I think something is missing in its application to chronic pain. In a way, the story of SDOH is not too different from a medical diagnosis. It also views the situation in terms of pathology and treatment; it just views society as sick, rather than individuals. To put it another way, chronic pain is still considered a problem, just one of collective humanity, rather than of individual people.
My second step towards a new understanding of chronic pain was to wonder: what if it isn’t a problem? What if it’s part of a solution? This line of thinking began for me in studying disability justice. A key tenet of disability justice is challenging the pathologization of disabled people, instead recognizing disabled bodies and minds as inherently whole and valuable (Rodriguez et al., 2022; Berne et al., 2018). This means understanding the difficulties disabled people face as due not to the differences in their bodies and brains, but rather to the social, political, and economic structures which marginalize them (Kafer, 2013; Ruppel, 2023). Turning this vision of inherent wholeness towards bodies experiencing chronic pain, I started to see that a different story of pain was possible.
Pain is not a problem; it is information. Pain plays an important function in the nervous system, letting the brain know that something harmful is occurring that needs to be stopped (Tracey, 2017). And recent scientific research shows that physical pain signals in the body do not occur in response only to physical harm, but also to social and emotional harm (Schubiner et al., 2023; Hood et al., 2023). Our bodies cry out when we step on a nail, and they also cry out when we live under psychologically harmful conditions, such as systemic racism or cisheteropatriarchy. This latter cry—the cry of chronic pain—is crucial information about the world we are living in. It constitutes collective embodied knowledge on a massive scale about the most impactful issues of our times: power, inequality, and systemic violence.
But it is not being listened to. Many people stigmatize chronic pain, dismissing it as mental illness or as made up to try to score opiates (De Ruddere et al., 2016; Solberg et al., 2024), and even those who do acknowledge its reality still tend to conceptualize it as a problem to be solved through medical treatment. I have come to consider our current approach to chronic pain to be a mass epistemic injustice—a term coined by Fricker (2007), referring to harm done to someone in terms of belittling their capacity to hold knowledge. Chronic pain is knowledge, held mostly in marginalized bodies, which has been belittled as disease. This is not only unjust, further marginalizing the oppressed, it is also a major missed opportunity. Chronic pain is a font of wisdom about the problems of our world and how to sustainably address them. We shouldn’t be asking how to get rid of chronic pain, we should be asking how to better listen to it.
To provide a model for this listening, I present below a poem that I wrote as an act of listening to my own chronic pain, exploring how it relates to my gendered experiences as a trans man. I hope that as you read it, you will hear not only the cry of my body, but also the cry of your own and of those around you. I invite you to reflect on how this poem makes your body feel, on what knowledge your body has that may have been silenced or denied, on what knowledge other bodies have that you have not been able or willing to listen to, and on how you might begin to listen better to your own body and the bodies of those around you. After all, chronic pain is happening right now in the bodies of over 50 million Americans and billions worldwide (Tabernacki et al., 2025; Zimmer et al., 2022); chances are you’re either experiencing it yourself or you know someone who is. It’s time to start listening.
My Pain and I
I sit beside the ocean of my pain
and I ask it
how are you today?
It says, “I’m angry.”
With me?
“With the broken elevator.”
I nod. Me too.
“And the callous landlord who won’t fix it.
And the money that made him numb.”
What else? I ask.
(I can tell my pain’s anger has barely begun)
“I’m angry with the grocery store.”
The grocery store?
(My pain is always surprising me)
“The hygiene aisle,
flowers and wolves on poisonous plastic,
bleaching what is natural and strange
to white uniformity.
I could hurl, it makes me so angry.”
What else?
“Oil rigs.”
What else?
“Land theft.”
What else?
“Sexual assault.”
What else?
“Executive orders.”
What else?
“Cops holding teenagers up against the
grimy subway wall.
Commuters walking coldly by
as if it were television playing in the background.”
What else?
“I’m angry that they told you tampons were supposed to hurt,
and if you were too much of a squealing baby to handle it,
you should just shut up about it.”
I’m quiet.
The ocean waits
(my pain is patient and bigger than me).
I tell it, I was supposed to grow into
make-up and dresses,
nakedness and penetration,
soft acquiescence to power.
When I didn’t,
when it hurt,
they left me alone
on the tiles of the bathroom floor.
“I know.
I was there.”
What is the point, I ask,
of anger? What does it change?
My pain doesn’t answer
(it doesn’t deal in “why”s)
but it asks me questions:
“What is the point of a wildfire?
What is the point of a fever?
What is the point of storms moving
from high to low pressure
and mowing down houses?
What is the point of species of fish going extinct?
Of children dying?
Of genocides and fascism?
What is the point of sickness and pain
and the violence people do?
And why does it keep getting worse?”
I don’t know! I shout.
That’s why I’m asking you!
And the ocean absorbs my sound
into its silence
(my pain can hold anything).
I am angry.
“With me?”
I hesitate.
With the confusion.
“The confusion.”
With five different doctors saying eight different things.
And when they come up empty,
and I make my own prescriptions,
I’m chastised and spun around
by people who have never felt my pain.
And when I make my own meanings,
when I try to listen to you,
I get handed a pamphlet
about how to stop identifying with pain.
How am I supposed to hear myself think
in all of the noise?
I’m so so so so angry.
“Go on.”
I always thought it was a problem with me.
Why didn’t I like the right things?
Why couldn’t I love the right way?
Why didn’t I get along with my own body?
But the bones of this world are set wrong—
trucks are for boys,
and keeping house is for girls,
and don’t you want to buy our products,
and work two jobs to afford them?
and even my gay friends play these same rituals,
where the big one with the deep voice is in charge,
and you have to be White and you have to be thin and you have to have clear skin and you have to have money and you have to be able to dance and you have to be chill about sex and you have to have the genitals they expect you to have and you have to show the signals of politics without making anyone uncomfortable for one single second
and it’s like I’m still in high school with the
why aren’t you shaving your legs yet what’s wrong with you and why won’t you change in front of us what’s wrong with you and why can’t you just wear a dress to the party what’s wrong with you and why can’t you picture our future together what’s wrong with you and why don’t you like being touched there what’s wrong with you and why
am I sitting alone on the shore of my pain
as if it is the problem?
As if I am the problem?
My pain opens its heart to me
(it is made, it seems, of more heart than anyone I have ever known):
“when the world is bleeding,
you are either angry
or you are dead.”
Now I am beginning to understand.
Thank you, I say,
for being with me
when I was alone
on the tiles of the bathroom floor
and when I got up.
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Benjamin Klebanoff, recent MSW graduate from Silberman School of Social Work.