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My heart jumped, then thudded, as I faced my fears and the door to Room 207 at Los Altos High School. In three minutes, I would walk in, proceed to the head of the class, listen to teacher Cathy Dao recite my bio to roughly 30 10th graders — and then I would say “diarrhea” out loud for the first time in my life to an in-person public audience.
It was 2024, and I was at the school to discuss a piece of mine that HuffPost published nearly three years earlier, “Here’s What I Want You to Know About Having Diarrhea While Out in Public.” The essay addresses bathroom urgency, a condition millions of people experience, some for a limited time and others to varying degrees for the rest of their lives. Because I have Crohn’s disease, I’ve been dealing with it on and off for decades.
Bathroom urgency can affect people with other chronic medical conditions, too, including those with urinary incontinence or paruresis (shy-bladder syndrome); people with ostomy bags; and people on certain medications, say for cancer, weight loss or iron deficiency. But it also can strike delivery folks, mail carriers and other people who don’t work in a building with restrooms nearby, runners, young children and the elderly, and people without homes. Essentially, at some point, there’s a good chance that everyone will require a public restroom because of an urgent need to go, and my essay laid out the need for more easily accessible facilities.
The HuffPost Personal editor had liked my article straightaway — I was the one who put the brakes on publishing it. Several weeks before it was slated to go up on the site, I emailed him, “I’m scared to have this piece published — wondering if I’ll have the nerve to post on social media.” The thought of appearing before such a large and public audience as someone who experiences diarrhea was terrifying, especially because so few people talk openly about it. However, that was all the more reason to move forward. I slept on it, and then nervously gave my editor the go-ahead.
Across social media platforms, the feedback was mostly positive. One person wrote about waiting for this article for their entire life. A few people were not supportive, writing comments such as, “This article is disgusting.” Hearing something like that can stick with a recovering people-pleaser.
Ultimately, I was happy I’d written the essay — and was happy I was going to be talking about it at the high school. Thanks to an invitation from the school librarian, Gordon Jack, to participate in the school’s annual Writers Week, I had first discussed my writing with students there six years prior.
Five days before my talk, I emailed Ms. Dao, whom I’d gotten to know over the years. “Curious how my article was rec’d by your students, and/or if you have any suggestions re: approach?”
Ms. Dao assured me that she’d told her first period class I had never spoken these words to a non-Crohn’s audience, and that she was confident they would be mature, but I was still anxious. Telling the truth meant risking ridicule, rejection and/or embarrassment — especially in front of high school students. That said, I also knew that if I didn’t start telling my truth, it might not make it out into the world.
Standing before the classroom door, I summoned my purpose: to raise awareness and to ease at least one other person’s way… even if I did not know how much it would ease mine.
Clutching my marked-up essay in one hand, and reaching for the doorknob with the other, I headed into that high school classroom… and my deepening vulnerability.
I’d had a carefree childhood in a close-knit seaside town, just riding the waves and my Schwinn — until I began to feel ill weeks before I entered 9th grade and 19 years before the Americans with Disabilities Act.
After 18 months of watching and listening to the swirling white coats from my exam table perch, I finally got a diagnosis: Crohn’s disease, one of the two main forms of inflammatory bowel disease (IBD), along with ulcerative colitis (UC).
One afternoon in the waiting room of my new gastroenterologist, I grabbed a brochure for a camp for kids with Crohn’s. I thought if I went, maybe I could make even one friend who got this disease without me trying to get them to get it. I excitedly flapped the brochure in my mom’s direction on the drive home.
“Can I go to this camp for kids with Crohn’s?” I asked.
My mom had doggedly pursued a diagnosis for me. She sat up at night worrying about me, stuffed enemas up my back side, cleaned up my vomit and diarrhea, and watched “The Mary Tyler Moore Show” with me rather than socializing on Saturday nights. She showed up for me in every way she could, but she just couldn’t bring herself to actually talk about what was really going on. Like most of us, she was a product of her time and upbringing. I loved her more than anything — she just didn’t understand where my desire to go to the camp was coming from.
“No,” she answered. “We’re not going to focus on that.”
And so we didn’t. We talked about my disease as little as possible.
I learned my lesson: Never show my stripes in public. I was also a teenager, and I wanted to fit in, so I hid my shameful secret as best I could — even from myself. Advocating for people with invisible disabilities never crossed my mind at that time.
Decades later, in 2016, I heard a news commentator mention a survey about the easiest way to get out of work.
Tell them you’re having digestive problems, she said, because no one wants to talk about them, and you won’t be asked any questions.
She and her cozy colleagues all laughed.
“Some patients with severe ulcerative colitis flare-ups may need to use the bathroom more than 10 times a day,” Crohn’s & Colitis Foundation Chief Scientific Officer Alan Moss, MD, wrote in an email. “This frequency makes it very hard to leave their homes.”
So UC, as well as a variety of other medical conditions, can sometimes cause people to become virtual prisoners in their homes — if they have them.
Those same conditions can cause people without homes to go through periods of routinely scrambling to find a bathroom quickly, if they find one at all, on top of their other day-to-day challenges.
Tragically, in 2019, a 10-year-old Kentucky boy died by suicide after being bullied about his colostomy bag, which resulted from a bowel condition he’d had since birth. For a variety of complicated reasons that may include bidirectionality as well as bathroom-use embarrassment, people with IBD may also experience depression as well as suicide attempts and death, as can those with IBS and other chronic diseases.
After four decades or so with Crohn’s, I was extremely weary — from finding bathrooms while out in the world, from the vomiting, diarrhea and acute pain that occurred separately or simultaneously, from feeling invisible, from pretending, from searching for words to convey one of the fundamental stories of my life — all of which I only realized after talking to my therapist.
She was the first person I ever told about my nights in high school when I experienced the howling pain, about how I would writhe on the bathmat behind closed doors and never wake my parents, and only the second person I ever told about a particularly awful bathroom accident in college. Shortly thereafter, I told my husband of 30+ years about both. I never did tell my parents.
I made a video about my Crohn’s for our church.
“What you see isn’t my story,” I said, “and isn’t that true of all of us?”
I also helped organize an invisible disabilities week at church, including a Zoom panel in which I participated. I spoke on another invisible-disabilities panel, again comforted by the barrier my computer screen provided.
In 2020, chained to my desk during lockdown and wanting to give others the voice I couldn’t find for so many years, I co-founded the Disability at Stanford Oral History Project for people in the Stanford community with disabilities. Individuals — including me — were interviewed about their experiences for two to four hours.
Little by little, I was coming out of myself and sharing my stories with more and more people. Publishing my essay on HuffPost exposed me in an entirely new way.
“Thank you for sharing your personal story. It helped me to know that for the last 35 to 40 years, I have not been alone,” wrote one reader.
Another commented, “For every sufferer who happens to stumble on this courageous piece, there are many others who won’t. I hope it goes viral for all of us.”
One reader confessed, “I’m so glad I did read it, and feel like a jerk for my snarky thoughts.”
A pediatric health psychologist shared, “I work with youth with chronic digestive conditions, and having this out there in such a public forum is huge in breaking down stigma and shame … felt by so many kids…”
Hundreds of thousands of people read my piece. I was overwhelmed by the response.
A few people who read my article pointedly challenged me about whether I wear protective underwear, which made me realize I’d lived inside myself for so long that I hadn’t considered writing about how I can go a few years without having an accident while out and about.
Their questions prompted further self-examination, and I’m happy to share more about what my life currently looks like with Crohn’s.
I take most of my thrice-weekly walks in city parks and on school campuses that I’m familiar with so I can quickly locate one of their numerous, fairly clean bathrooms. If I walk on trails or at the beach, I might take an Imodium before departing, which I also do when I travel. I know I can access bathroom-finder apps such as “We Can’t Wait” or “Flush,” among others, and I continue to always carry a change of clothes with me. I take two fiber pills daily, and follow my gluten- and dairy-free diet (most of the time). All of this helps me feel better and gives me more confidence to venture out.
My situation can still turn on a dime. That’s part of having a chronic illness like mine. That said, I have not had a single accident related to bathroom urgency outside my home since my HuffPost essay was published in 2021.
We’ve learned more since then.
Seven weeks after my article appeared, Rebecca Kaplan, then-associate director of marketing & communications at The Crohn’s & Colitis Foundation, reported to me that the Foundation had seen a recent uptick in requests for their “I Can’t Wait” card, which people with IBD can show proprietors or those at the front of a public bathroom line to prove they have to get to a stall immediately.
Courtesy of United Ostomy Associations of America
Thanks to COVID-era discussions, the 2023 coverage of a Delta passenger who had diarrhea in their seat (I cannot imagine), the side effects of new medications like Ozempic, and a social media trend intent on normalizing stomach and bowel concerns, diarrhea-related internet searches jumped by about 40% from 2018 to 2023.
The Portland Airport has opened single-occupancy, all-gender (SOAG) restrooms that are inclusive, accessible and touchless. Earlier this year, New York City’s Public Restroom Act was signed, and the bipartisan Trucker Bathroom Access Act was reintroduced in Congress. If we can’t bond over our shared bathroom needs, what can we bond over?
But there’s still a lot of work to do.
We need more, cleaner, safer public restrooms and a whole lot more compassion. And we need to have more conversations about bathroom urgency, why it happens, and how we can help one another.
That’s why, as scary as it was to meet that group of high schoolers face to face, I showed up and discussed my essay with them. Unbeknownst to me, Ms. Dao had asked a student from another one of her classes to attend my talk. During the Q&A, that student revealed we share the same disease.
“It was a good feeling to listen to someone who has that common experience,” they told me later, adding that they’d never met anyone else with Crohn’s. Maybe they saw their 15-year-old self in my six-decades-and-counting self. I definitely saw my 10th grade self in them.
May we all be as respectful to one another as Ms. Dao and her 10th graders were to me. Though I still prefer the page to the podium, Ms. Dao and her students helped me feel safer and better about speaking up and out. And here I thought I was there to teach the kids!
This year I returned to Los Altos High School to talk about my article again, only this time I had far less fear. I’ll be back again next year if they’ll have me.
Change — for me and for our society — is slow. But I can see it.
And this is how it happens: one word, one step, one stall at a time.
Alison Carpenter Davis, a former Outside magazine managing editor, has written about life with Crohn’s for HuffPost and the International Herald Tribune, and is at work on a memoir. Look for her interviews for I’m Still Rolling, as well as the Disability at Stanford Oral History Project, a project she co-founded and for which she received the 2024 Susan W. Schofield Award. She’s written on a variety of topics for the Chicago Tribune, The Des Moines Register, The Independent, and the International Herald Tribune, among others. Her book Letters Home from Stanford was released in paperback last year. You can contact her here.
To learn how to advocate for the Restroom Access Act, also called Ally’s Law, go here. To ask for a restroom-access form or wallet i.d. card, contact your health-care provider, the appropriate nonprofit organization related to your medical condition, or your state health department, which may provide a downloadable form similar to California’s health department.
If you or someone you know needs help with mental health issues, call or text 988 or chat 988lifeline.org for support. Additionally, you can find local mental health and crisis resources at dontcallthepolice.com. Outside of the U.S., please visit the International Association for Suicide Prevention.
Do you have a compelling personal story you’d like to see published on HuffPost? Find out what we’re looking for here and send us a pitch at [email protected].