It’s not unusual to fast before a medical test to avoid skewing the results. But Dr. Zoë Gottlieb’s patients often skip meals for a different reason.
Gottlieb, a gastroenterologist and assistant professor of medicine at Mount Sinai’s Icahn School of Medicine in New York City, specializes in treating inflammatory bowel disease (IBD), an umbrella term for conditions involving chronic inflammation of the gastrointestinal tract, specifically Crohn's disease and ulcerative colitis. People with IBD have “unreliable bowel habits,” meaning they may need to use the bathroom frequently or urgently, Gottlieb says. So when a patient doesn’t eat before their appointment, it can be a sign that they’re afraid they’ll be caught without a restroom when they need one, she says.
That fear is warranted in the U.S., where there are just eight public toilets per 100,000 residents, according to a 2021 report from bathroom-supply company QS Supplies. That’s a public-health issue that acutely affects IBD patients but spares no one, says Michael Osso, CEO of the Crohn’s & Colitis Foundation.
“Everyone needs bathrooms,” Osso says. “And, frankly, it feels fundamentally wrong that we can’t support people in our community when they leave their homes by meeting this obviously critical need.”
The issue is serious enough that some people with IBD choose to stay home rather than risk ending up in a place with unreliable bathroom access, studies show. One 2012 review of previous research on IBD found that patients frequently reported a fear of incontinence that often led them to pull back from their work, social lives, or hobbies. “Actual episodes [of incontinence] were rare,” the authors wrote, “but the fear remained constant.”
That fear, and the lifestyle changes it prompts, can lead to or exacerbate feelings of isolation, loneliness, and depression, Osso says, which kicks off a vicious cycle. Mental-health issues can worsen IBD symptoms, since the gut and brain are closely connected, studies suggest. Some research even suggests IBD patients who are socially isolated are at an increased risk of premature death.
“A huge part of being able to heal,” Gottlieb says, “is having both their physical and mental health appropriately addressed.”
But it’s not only people with IBD who suffer when there’s not a restroom in sight. People with a range of chronic conditions, as well as pregnant people, parents of young children, and elderly adults, may need bathrooms frequently or with little warning. (People with mobility issues or disabilities are at a particular disadvantage in their hunt for a usable toilet, as many public bathrooms aren’t designed with their needs in mind.) Unhoused people and those whose jobs require them to be out and about all day—like delivery and taxi drivers—often rely on public facilities. And no one, regardless of job or health status, is immune from the occasional urgent situation, as Theodora “Teddy” Siegel learned when a 2021 shopping trip turned into a frantic search for a bathroom.
Siegel averted disaster only after buying a bottle of water so she could use the bathroom at a McDonald’s in New York City’s Times Square. Shaken by the experience, Siegel began posting on social media about where to find restrooms around New York City. Her audience grew almost immediately, and followers began to submit their own bathroom hacks. Those crowdsourced submissions now live on a giant map, which Siegel says Google representatives told her is its most frequently used map in the world—an impressive feat, but one that also speaks to how difficult it is to locate a bathroom without insider knowledge or the disposable income to buy something from a shop with a customers-only restroom.
The U.S’ poor public-restroom infrastructure is a multi-pronged issue. As Bloomberg has reported, the reasons for it range from chronic under-funding (public facilities are costly to build and maintain) to discrimination (during the Jim Crow era, some cities refused to build “separate but equal” facilities). In the present day, some city officials are also hesitant to build bathroom complexes because they tend to become hubs for drug use and sex work, the New York Times adds.
But there is also research to show that public health and well-being improves when high-quality restrooms are available—not only by improving access for people who need to go, but also by cutting down on health hazards like public defecation and urination.
Some states have passed legislation meant to ensure that people with certain chronic conditions, including IBD, can use businesses’ employee-only bathrooms when necessary. But these laws often don’t work as well as intended because of lacking compliance and awareness, prompting the Crohns & Colitis Foundation to start its Open Restrooms Movement. The initiative calls on businesses to let the public use their facilities, and to publicize that stance by joining the listings on the Foundation’s We Can’t Wait app. “There is an opportunity for [businesses] to promote inclusivity within their community and be a good partner to the citizens around them,” Osso says.
Siegel became an accidental bathroom influencer by sharing tips about businesses with clean, accessible bathrooms. (Department stores, bookstores, and grocery stores are usually safe bets, as are churches, she says.) But she also feels it's “unfair” for the entire burden to fall on private establishments, rather than local governments. It’s a “failure,” she says, that New York City has only about 1,000 public toilets to serve a population of more than 8 million, and she has advocated for local legislation that would identify New York City neighborhoods in need of more public facilities and boost the overall number of bathrooms available. Advocates in cities including Portland, Ore., Washington, D.C., and Cincinnati, Ohio, are pushing for similar outcomes.
“Bathroom access is a basic human right. It shouldn’t be a privilege,” Siegel says. “I hope that this is something we all look back on one day and are horrified by.”
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Write to Jamie Ducharme at jamie.ducharme@time.com