The queer life of chronic pain

I am always in pain and it’s altered my relationship to myself – made me scared of car journeys, my acne worse and skewed my sense of my body as something that may give me, or others, pleasure

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Chronic pain Dazed 1

Brittany’s been bad. She is a drag queen and a rat. She comes from California and was born in 1994, amidst soft cyber sounds. Her debut novel, OOLA, will be published by The Borough Press (HarperCollins) in the UK and by Henry Holt in the US and Canada, both in 2017. She is working on a new novel about asexuality and CCTV.  

I spend a lot of time lying down. I wish this was a more glamorous statement. After every meal, I have to throw myself down on a bed or else suffer nausea, heartburn, indigestion, upset stomach and Biblical bloating for the rest of the day. Due to an inability to digest food properly, I’ve been in pain every day since my 20th birthday. I’ve been diagnosed with various conditions, but nothing sticks. People who sort of know me might say that I have a “thing” about eating; people who live with me (and thus share a bathroom) might shake their heads gravely and whisper, “It’s bad.”

Chronic pain is the easiest way to describe what doctors alternately write off as “lady problems” and suggest a series of surgeries for. I dream of the day I can afford a fecal matter transplant; there was a low point last summer when I downloaded instructions for a DIY FMT (advising: “fresh poop is best!”).

Writing about one’s pain is weird because it always sounds braggy — like, look how tough/brave/intense I am, with my unclassifiable body! But really, there is nothing hardcore about walking around with your pants unbuttoned because one bite of burrito makes you look six months pregnant. My chronic pain is humiliating, and it makes me a drag; sometimes I’m so gassy that to go outside and socialize would be, frankly, immoral. I hate that I’m the skinny bitch who cries, “I’m not hungry!” when friends go out to eat, though little do my fellow diners know, I’m doing them a favour.

Among the many ways that chronic pain has altered my relationship to myself — given me a phobia of car-trips, made me hate eating, intensified my acne — it has most permanently skewed my sense of my body as something that might give me, or bold others, pleasure. My body is a cage, claims some jangly song on the radio, and I couldn’t agree more. And yet because of how often it hurts me, I’m obsessed with my body, in a way that might be quasi-amorous, if love is defined by nonstop thoughts about something, an inability to put them or it out of your mind. The idea that my body might be a source of pleasure for someone who manages to overlook its obvious wrongness, or, more absurdly, for me, whose greatest wish is to forget that I have a body at all, is nonetheless frequently posed to me.

“In this way, chronic pain might not seem so different from dysmorphia or shyness or sexual hang-ups or invalidation or any of the other things that make having a body so trying”

I get it. I’m 22, surrounded by hot bods in bars. If the people around me resent their bodies for some valid or imagined reason (because their body is too masculine, because they attract the wrong people, because they’re subject to harassment), they can usually find ways, however temporary, to make them work. These aren’t always the healthiest ways, but it seems to me that in order to survive in our racist/consumerist/visual culture, everyone must find their own private method for forgetting the flesh once a weekend at least. What you wear can make a major difference. XXL t-shirts are a poor girl’s solution to the horrors of embodiment. Obviously, what you do to your body or put in it can be a means of temporary oblivion. In this way, chronic pain might not seem so different from dysmorphia or shyness or sexual hang-ups or invalidation or any of the other things that make having a body so trying.

Any armchair-feminist knows there is an industry built around people hating their bodies, an industry imbedded firmly in a history of body-domination. It’s a radical act to challenge this rhetoric, to redirect the vast amounts of energy that one can spend obsessing over their body — how it is read, how it is flawed, how it has failed — into more productive pastimes. But what about when these claims feel valid, when I can’t help but agree with Jamie Lee Curtis, probiotic goddess and semi-lez, when she says my body is defective and I need to change? My chronic pain is one instance where I pine for normalcy, for literal regularity. I envy the yoga babes with their acai bowls and clockwork intestines. With regards to my belly, I don’t want to be queer; I want to be normal and basic as fuck.

“If you were a kitten,” my loving mom tells me, “they’d have drowned you.”

Queer life and queer politics work to denounce the normative body as a racist cultural fiction, rejecting its streamlined modes of desiring. Different communities, with equal flair, create alternative romances of failure and transgression. But for however well notions of genderfuckery describe my ways of wanting, I can’t seem to apply these same narratives to my fucked gut. This is not a pain that comes from outside-in, not the same pain as being mislabeled or objectified or told my desires are vile; in fact, no one is usually interpolating me as unwell (until I eat legumes and end up supine). The wrongness comes from within; it’s a structural failing. My chronic pain sits invisibly beside my sexual fantasies, largely unseen but keenly felt at most times.

“This is not a pain that comes from outside-in, not the same pain as being mislabeled or objectified or told my desires are vile”

Both because of personal inclination (pervy writer) and my queer environs (Bay Area), I’m obsessed with bodies, not just my own: the way gender and race warp and control them, the way every stranger knows better than you what you look like, the crisis of hair. After staring at me for a lusty beat, a person told me that my zits turned them on. Internally, I lamented my T-zone, though I had to admit, I’d found myself attracted to the burst veins in this person’s nose, the flower-shaped mounds of scar tissue on the backs of their hands. Bodies will always elude and deceive us. Through kink and its spinoffs, there are ways to get into the grossness, to have fun with the sketchiness and stretchiness of flesh. But this type of celebration seems impossible when one sip of soda can literally fell me. I feel pathetic and weak. I can’t yet get to the point where I view my pain as enlightening, much less erotic.

“Britttaannnyyyy!” a prying neighbor chided when she learned I didn’t eat gluten (nor onions, nor beef). “Bread is not the enemy!” No, I wanted to bellow, hemorrhoids are.

Maybe my problem is being too literal. Maybe I’ve taken too seriously the queer claim to sickness, as in the men on the bus heckling Eric and me—that’s freaky, that’s sick—on our way to a bar. A lot of the time I like sick and freaky things; certain sick fantasies can expand one’s sense of the possible. But sometimes I am a sick thing, and then my fantasies shrink to a bland longing for bed, for peppermint tea. I struggle with this back-and-forth, between the rare nights when my body can be trusted and it leads me to fantastic (“sick!!”) experiences, and the majority of the time when I’m rendered blobby and boring by its unceasing pangs.

“Every day,” a friend said of her explosive IBS-D, “I lose myself.” I love this phrasing because in another context it could be used to describe ecstatic peaks of pleasure, rather than a daily trial.

Among the million reasons that Eric and I get along is our mutual discomfort with embodiment — hers rooted in dysphoria, mine in the small intestine. She and I spend a fair amount of time curled up in loose clothing, rejecting the other’s reassurance that we don’t look like Shrek, distrusting the being we see in the mirror. Certainly our pace is slowed; it takes a long time to get dressed, to make food. Certainly our sense of ourselves and how others perceive us is deeply distorted — I could tattoo MY WIFE IS BEAUTIFUL across my forehead and it still wouldn’t dispel her doubts, and frankly how could it, given our national landscape and frequent scuffles on the bus?

Certainly how we feel becomes synonymous with how we look—it frightens me that, on a day when I feel bad, I can look in the mirror and literally watch my body deform, my belly swell to planetary proportions, my face instantaneously break out, and I don’t know how much is delusion and how much is fact and how much is pain, which falls somewhere between. All my close friendships have been with people who are distinctly uncomfortable in their own skin, due to IBS, dysphoria, mental illness, trauma both personal and historic. Still, I love the skin Eric wants to peel off. I’d get that tattoo if it soothed her. She’s patient with me and my whining. We drive with the windows rolled down (for want of fresh air), long hair blowing about.

“We’re all just chili in the end,” another shit-challenged friend tells me sagely.

Queerdom is allegedly savvy to this lack of control over our bodies (i.e. big bowls of chili). By one friend’s definition, queerness is about finding ways to make the inevitable disciplining of bodies more sexy. “Discipline is fun!” they said. As a project of and commitment to desire, queerness hinges on pleasure, or rather, when and where and how one feels good. So how is this project altered if you never feel good, only queasy? Sometimes I wonder if my chronic pain make me less queer, divorced as I am from the hot force of desire. I’m more often preoccupied by the hot force of lunch. Does chronic pain make me inherently vanilla, despite the fantasies I harbour, because with regards to what happens below the waist, I’m most thrilled by neutral, by no sensation (of burning, of cramping, of bloating) at all?

“In the past two years, I’ve come to redefine queerness as an obsession with the body, a nauseous scholarship as I stare outward and inward, rather than the real-life pursuit of its deviant pleasures”

With daily pain, you come to accept that there are no clear answers. Doctors are pointless, as are neat endings. In the past two years, I’ve come to redefine queerness as an obsession with the body, a nauseous scholarship as I stare outward and inward, rather than the real-life pursuit of its deviant pleasures. I lie in bed, but rarely do anything in it. My femininity is as deviant as my digestion.

I write all this because I know a staggering amount of queer/queerish folks with IBS and other forms of chronic pain and belly-centric woes. I think there’s an interesting (if terribly inconvenient) connection between both types of irregularity — in who you hold in your heart and what gets stuck in your belly, in the multiple ways one can have a good/bad body, in the sexy and less-sexy versions of “personal matters” or “private affairs.” Hopefully I’ve spoken to some people’s experience of embodiment, as it is never easy to talk about the body in pain, nor about desire, nor where one produces the other. Of course, it’s not easy to talk about shit. This is a shame, as nothing influences my life more than my screwy digestion — not my politics, not my work-life, not who I covet. Chronic pain impacts my relationship to all of the above, and I think this is the case for many people, even if we rarely say so. So if you ever want to talk, to whine for hours about BBQs and compare bloated bellies, come find me. Odds are, I’ll be starfished in bed, pants unbuttoned, window open for the breeze.

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