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Breaking the Stigma of Living With Ulcerative Colitis

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The doctors told me I had colitis when I was 13. Shortly before I was hospitalized, I had started to lose the color in my lips. The blood had retreated from my mouth like from the flesh of a corpse until only embalming gray remained. I wasn’t able to walk a full block without stopping, a little hand holding me up against the wall, to catch my breath. Anemia, but when the crowd of nurses and doctors holding clipboards huddled around my hospital bed, they made it clear that was just a symptom of the disease — literally.

Ulcerative colitis. Crohn’s disease. Inflammatory bowel disease. My first reaction was fear. The word “disease” terrified me. The word sounded like other people, like sick people, like tragedies, like death. It tasted like a term that would make classmates afraid to be around me, treat me differently. That is how I learned to understand disability — as the Other. This Other, my Other, was pronounced with heavily sedated words that felt like IVs and blood transfusions.

There is a reason these words say absolutely nothing about what IBD is actually like. Much like He-Who-Must-Not-Be-Named, “colitis” and “Crohn’s” are names people use to avoid describing the actual essence of these conditions. You’ll be hard-pressed to find anyone willing to elucidate what colitis is without clearing their throat. These terms are euphemisms conveniently utilized because most people are uncomfortable enunciating the actual lived reality of IBD.

We’re the same, those of us who live with IBD. We tacitly agree to use this medical journal language no one actually comprehends to spare the population the messy details.

And by population, I mean people without colitis — people who haven’t doubled over in pain as black holes ingurgitated their intestines, who haven’t squinted at their shit in a toilet bowl to see red blood stream through canyons of brown, whose insides don’t scream up their esophagus through gritted teeth that everything is OK, who don’t become nauseated at the mere scent of Febreze in closed bathrooms, who haven’t raised their shaky hand asking to go to the restroom a third time as people eye them like they’re freaks, who haven’t felt minutes hunched over on toilets drag across cold sweaty skin like nails on a chalkboard.

Are you feeling uncomfortable yet?

We have as little control over the way the discourse about us is conducted as we do over our own bowel movements. We cannot speak into words our sometimes daily experiences without subverting the norms of our society. If we did speak up, we would disturb. The nature of our lives is disturbing. To conceive of our lives, the abled are forced to conceive of all the messy bodily functions that they spend most of their time avoiding.

So, to spare them, we hide in plain sight. We pretend nothing is wrong. We pretend we aren’t in horrific pain or, if we are not, that our lives aren’t shaped and molded by the reality that pain can strike us at any given moment.

Disabilities like colitis are often categorized as “invisible disabilities.” The Invisible Disability Project defines that term as “a disability that cannot be easily seen or measured; often discounted or not respected.” While that does capture the core idea that our lived realities are often dismissed, I challenge the concept that these disabilities are necessarily invisible. The way we interact with and mobilize our bodies manifests in distinctive physical actions. These movements are not invisible, especially not to our loved ones. If a disability is made visible through attention, then the factor that defines that type of disability is not a lack of visibility, but rather a lack of perception. Just because abled people don’t pay enough attention to recognize our bodies doesn’t mean our bodies are invisible. We aren’t invisible just because you specifically cannot see us. Colitis is not invisible as much as it is unspeakable.

That enforced silence — which abled society requires of us — not only infects regular daily conversation; it continues to contaminate academia. Even disability studies have a hard time discussing those of us with IBD. Dr. Cindy LaCom, in her journal article “Filthy Bodies, Porous Boundaries: The Politics of Shit in Disability Studies,” wrote that

“… there is the very difficulty of finding a grammar and vocabulary to discuss shit and its metaphoric place within Disability Studies. Identity categories are notoriously liminal, and though standpoint theory offers some strategies for articulating one’s situated knowledge, there is still a tendency to locate one’s self within artificially rigid boundaries. Thus, Eve Kofosky Sedgwick can identify herself as a straight woman doing queer studies, and Robert Young can identify himself as a white man working in postcolonial studies. But I cannot identify either as “PWD” or as a “TAB” (person who is temporarily able-bodied). I am neither or both, depending on the moment and my state of health. Do I thus revise and articulate my identity category on an ongoing basis? Like shit, which disturbs so many cultural norms, people with Crohn’s disease (and “disease” is itself a medical and existential category which often resists stable definitions), can disturb identity categories and raise complex questions of power, transgression, and the damning issue of the imposter syndrome which are hard to critically deconstruct.“

The social model of disability posits the mistreatment disabled people experience as what makes us disabled. We are only disabled because society is structured in ways that make us disabled. We don’t need to change; society should better accommodate us. On the other hand, the medical model conceives of our conditions as something wrong with us, something that needs fixing. Society is not the problem as much as how our disability forces us to be different from abled people.

In my view, colitis is a dual monster. On one hand, society does not accommodate us. We are barred from language. We have no power over how we are discussed. We quite literally suffer in silence because of the way our bodies function, physically. If we react naturally, like screaming in pain randomly or sprinting to the bathroom, society views us as freaks.

That stigma is often maintained not only by figures of authority but by the henchmen of ableism — our abled colleagues, classmates, coworkers, friends, intimate partners, everyone who finds this behavior weird or looks at us strangely. Social oppression has real, material impacts on how we view ourselves and our relationships with our bodies, as do the medical bills that can stack up and entrap us socioeconomically, tickets we pay for the privilege of not developing cancer from our 25-times greater chance. The way the capitalist and social systems tolerate but never accommodate us is part of the dual monster.

On the other hand, colitis can be breathtakingly debilitating. We share most in common with those who have chronic pain, except our pain is a shadow that can pass over at any moment. It’s an inconstant constant. Colitis shapes every moment of our lives whether we’re in remission or not because the possibility of pain never goes away. We live with that medical reality that, given the chance, I would love to escape. That’s the second part of the dual monster.

In my head, I’ve named the dual monster “Colin.” Colin and I have an ongoing abusive relationship. He is an alien parasite and I’m his host. We’re stuck with each other: I can’t cut him out of me (yet) and he can’t survive outside of me. Over the 11 years since diagnosis, we’ve gotten better at living with one another. At the moment, we have a mutual agreement. I continue to feed Colin infusions every several weeks. He prefers these infusions to pills, and has ever since his greed for my attention expanded. In return for infusions, he won’t devour my intestines from the inside. I’m afraid every day he’ll change his mind and gnash his teeth into my stomach lining. But for now, the dual monster is satisfied.

Colin and I don’t have a very healthy relationship, but it certainly doesn’t help that whenever I show signs of Colin’s abuse, people feel uncomfortable. As if their discomfort in hearing about the abuse matters more than the abuse itself.

Since the dual monster and I began our relationship, some things have changed. People have started to hear the sanitized euphemisms of “ulcerative colitis” and “Crohn’s disease” more often. Usually, they’re pronounced by the lips of suburban white people in television commercials from Big Pharma companies. But pharmaceutical commercials, while doing the absolute bare minimum in raising awareness of IBD’s existence, do little to actually advance the status of people who live with the dual monster. The commercials embrace the comfortable silence preferred by abled society through portrayals of irrelevant parks and lawns while droning over the laundry lists of side effects that whatever new food for Colin they produced may have. Pharmaceutical “representation” is nothing more than profit-seeking commodification.

There have also been some high-profile cases of Colin wreaking havoc on our bodies. Shinzo Abe, the former prime minister of Japan, was forced to resign from his position in 2020 when his relationship with the dual monster deteriorated to a point that he could no longer carry out the duties of his office. This is perfectly understandable. It is quite literally a matter of life and death that Abe find a way to develop a better understanding with Colin — with his own body. But the cost of abled people understanding colitis through the resignation of a prime minister is that, rather than decrease stigma, it only further deepened many people’s suspicions about the worth of us as disabled people. Rather than force people to interrogate why holding political office is inaccessible, the response of many abled people was the opposite — to wonder if people like us are simply unfit for office.

I hope to see cures for ulcerative colitis and Crohn’s disease in my lifetime. I hope to no longer live in the shadow of pain. But in this society now, we are disabled. Colitis — or Colin — is a dual monster of both physical illness and social oppression. And while more people seem to be becoming aware of Colin’s existence through the marketing campaigns of Big Pharma and the personal struggles of political figures, these have not fundamentally changed our status.

We need to break open the silence completely. Comfort levels need to be deconstructed and discomfort confronted. People who avoid staring at shit have to compel themselves to stare at shit. As long as we shy away from discussing uncomfortable bodily functions, people who must live with Colin will suffer disproportionately from the stigma. Breaking the silence is neither our responsibility nor a task we with IBD are capable of completing. We are forced into silence at every turn and should not be expected to carry that burden further. No, destigmatizing conversation about bodily functions is something that must start with people without IBD.

So do it. Speak about the unspeakable.

Getty image by Hisa Nishiya.

Originally published: April 11, 2022
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