• Health

The Shame of the Adult Bedwetter

16 minute read

When Ben was 13, he walked into his bunk at a Wisconsin summer camp to see his worst fear realized: About half a dozen other boys, his friends and bunkmates, giggling as they rummaged through his suitcase and his pile of pull-up diapers. Each night at camp, Ben would wait for the bunk to fall silent so that he could tiptoe off to the bathroom with a pull-up from his well-hidden stash in case he peed in his sleep. For days, he’d gone to bed late and woken up early so that nobody would discover he was a bedwetter. But now, after letting slip to a hungry friend that he had snacks in his bag, the secret was out. “Everyone was kind of just throwing them around,” he says. “It was traumatizing.”

Ben, who’s now 23 and requested he be referred to only by his first name (as did many of the others TIME spoke with for this story), is one of the many adults who struggle with bedwetting. About 1-3% of U.S. adults have “nocturnal enuresis,” the term used to describe uncontrollable nighttime urination in anyone age 5 or older. And while the long-term health risks are minimal, the social and emotional repercussions of wetting the bed past early childhood can be so devastating that they practically merit a diagnosis all their own. There’s fear, isolation, and secrecy; missed opportunities, experiences, and connections. More than anything else, there’s shame.

There are two kinds of nocturnal enuresis in adults: primary and secondary. Primary describes people like Ben, who’ve wet the bed consistently—anywhere between every night and twice a year—since childhood. Secondary describes people who hit standard benchmarks as children and then suddenly began bedwetting again years later. While the latter is almost always brought on by old age, trauma, or injury, nobody really knows what causes primary nocturnal enuresis, though both types are markedly more common in men. What’s more, there are no surefire treatments for primary nocturnal enuresis, which means that many sufferers endure an emotionally taxing gauntlet of failed treatments in adolescence only to be left with an even more painful sense of defeat and resignation before even turning 18. Sooner or late, the doctor’s appointments stop, and the protective wall of secrecy goes back up. Some people with the condition continue to lean on family. Most talk to no one.

Missed milestones

The majority of people who wet the bed past childhood have a grade-school horror story—usually around a school trip or slumber party. At home, it’s easier to deal with wet sheets in privacy, and that insularity makes it easier to believe the issue will eventually resolve itself. “Around age 11 or 12 is when I realized that this is something that’s not ‘normal’ to still be doing: to be still wetting the bed, to still be in diapers,” says Ben. When sleepovers do start, the secretive pull-up method is the most popular choice, aside from avoiding nights away altogether. Ben says that the anxiety he felt attending sleepovers was so great that “they weren’t even enjoyable.”

Sam, a 29-year-old schoolteacher from London, remembers his own concerns ratcheting up around early adolescence as well, particularly when his younger brother’s bedwetting stopped before his. “That was the time when it turned from something I was really shy and self-conscious about into something that really tormented me,” he says, “and I could tell my parents were frustrated too.”

Many families believe the fewer people who know, the better. Occasionally, to smooth out the required plotting, a trusted educator or mentor is looped in. “In year 8, we had a French [class] trip” to France, says Sam, “and I remember my mom phoning school saying, ‘He doesn’t want to come, because he’s worried about being bullied.’” The big concern for the trip was spending the night aboard a bus, which meant that Sam and his mother had to arrange for a teacher to stay awake and notify Sam when they’d stopped at the last service station for the night. “I was like, ‘How at the age of 16, 17, do I go on this trip and tell the teachers that this is still an issue?’” he says.

Now, as a teacher himself, Sam is on high alert for students he thinks might be dealing with the same hidden anxieties. “I quite like the fact that I know how to deal with it better than any other adult that I work with,” he says. He’s talked openly about his experiences with a few children at his school who also wet the bed, but finds that he’s often walking a tightrope when trying to gently guide colleagues on overnight class trips toward best practices without having to explain where his expertise comes from.

As teens grow older, the problem can become harder and harder to hide. In college, where a roommate often means no privacy in your own bedroom, many bedwetters opt for single dorm rooms, even if they’d otherwise want the social experience of having a roommate. Carrying the burden of this secret can lead to introversion and anxiety that can make even simpler socializing feel just not worth it. Racquel, a 23-year old in Texas, remembers years of double-bagging soiled diapers in plastic and carrying them home from sleepovers in her overnight bag so that nobody would find them in a friend’s trash can. “I would rather do anything than tell someone that it had happened,” she says. These types of experiences, she says, “led to this weird anxiety around not wanting to be away from home because I won’t have all my stuff.”

For teens and adults with the condition today, there are pockets of online support, if you know where to find them. Message boards and review sites allow people to anonymously recommend sympathetic therapists and physicians, and a subreddit dedicated to adult bedwetting is one space to share and read stories and experiences. Racquel says she was shocked to discover her traumas weren’t unique when she came across the page in adulthood. But a fear of being outed in real life—and the fetishests who reportedly prowl the forum—means that building one-on-one connections there can be difficult. Community is useful, but for those engaged in militant secret-keeping, any degree of risk is too much.

Read More: How Big Tech Weaponizes Our Shame

One of the more difficult interpersonal challenges adult bedwetters can face is dating. “There’s just no good point to bring it up,” says Bob, a 38-year-old software engineer in Alabama who’s remained single most of his life. “And what do you even say?” Every bedwetter has heard the same refrain about dating from close friends and family, Bob and others say: If they’re a good person, they won’t care. Though those who’ve ventured out into the dating pool often find this to be true in practice, the anxiety seems to reset with each new relationship. For something so intimate, it can feel overwhelming to not always be able to share it on your own timeline.

When I talked to Racquel in March, she was planning to sit down for a serious talk with her boyfriend of six months. Racquel’s nocturnal enuresis disappeared for two years in early adolescence and re-emerged when she was diagnosed with diabetes at age 16. In adulthood, she’d go for months without an incident, and, through early 2023, hadn’t had one for the past 10 months—until just before we spoke. “I thought it was gone,” she said. “I was just like, I’m a normal person!

Earlier that week, she’d taken a chance and stayed overnight for the first time with her boyfriend. She woke up to wet blankets. Are you kidding me? she thought. After all this time? She’d steeled herself for a breakup before her boyfriend even awoke. To her surprise, he woke up grinning. “Did you pee on me?” he asked her, casually. “Are you sure it was you?” Then he climbed out of bed, grabbed a towel and a different blanket, and climbed back in to hold a stunned and teary Racquel. Assuming it was a one-time accident, he assured her it could just as easily happen to him.

Despite his reaction, Racquel seemed confident that disclosing her chronic problem was going to end the relationship. “I’m pretty sure that if I weren’t directly dealing with this issue, I wouldn’t be tolerant of it in a partner,” she says. “It’s just very logical to me if someone doesn’t want to spend every night with the person they love wondering if they might wake up with that person’s piss on them.”

The night after Racquel told her boyfriend all about her nocturnal enuresis, we spoke again. The talk had gone well. He didn’t break up with her; he just asked what he could do to help.

The trials of treatment

Studies have identified certain psychological risk factors related to bedwetting among younger children, including family stress and temperament issues, but there’s much less research on why PNE persists so much longer in some people. By age 5, 85% of children stop wetting the bed, with significant drop-offs in the first few years after.

Dr. Audrey Rhee heads up the Center for Pediatric Urology at the Cleveland Clinic. Most cases Rhee sees are primary nocturnal enuresis, and a portion of those patients suffer from developmental disorders and other serious health conditions in which cognitive and physiological deficits can cause bedwetting. Sometimes there are more minor comorbidities: Children with autism, for instance, are more likely to be affected by PNE. For the rest of Rhee’s PNE patients, the issue is more often than not unexplainable, and likely has a complex web of genetic causes relating to urine production and bladder control.

Motivation is key for behavioral modification, which is the first of three treatment options—followed by devices and medications—that urologists like Rhee will try once causes like legitimate sleep disorders such as apnea are off the table. Often, her recommendations involve tweaks to improve a child’s sleep hygiene and basic bathroom access: measures like limiting screen time before bed, cutting out caffeine and bladder-irritating foods like artificial colorings, and making sure that a kid isn’t tucked away on a top bunk where getting to the toilet requires a climb. Rhee discourages parents from being disciplinary, or “setting the expectation that if their child is wet in the morning, they’ve already lost for the day. They already feel bad.” Punitive responses to bedwetting have been linked to depression in children, which can interrupt healthy sleep and make the problem worse.

After behavioral modification, Rhee’s patients get bumped up to level two: the alarms. These small, brightly colored devices are made up of a playing-card-sized speaker the wearer pins to their shirt, connected to a wire that trails down to a sensor clipped inside their underwear. When the sensor gets wet, an alarm blares. The concept is simple; the execution is often lacking. The basic conditioning approach of the alarm only works if it’s worn every night. Rhee says that “only 20 or 25% of families actually use it appropriately”—in part because the alarm is often loud enough to also wake the rest of the household, the neighborhood, and the dead. To work, “the entire family has to buy in”—Rhee often sees sleep-deprived parents throwing in the towel or cutting corners after just a few weeks of nightly wear.

But, if used correctly over the course of three or four months, Rhee says, the alarms can have a high success rate—the literature puts it at around 75%.

Sam never wanted to try bedwetting alarms as a child or teenager, a decision his parents respected, but he did allow his doctor to prescribe him the third remedy typically offered by urologists for persistent bedwetting: a drug called Desmopressin, or DDAVP. Most people with persistent PNE will end up doing a stint on DDAVP, which works by mimicking a hormone that slows urine production and usually circulates in higher levels at night. Some physicians prefer to prescribe DDAVP before trying alarms, particularly for older patients. Like many PNE treatments, it works better for some than for others: Its success rate can be as high as 80%, but relapse is common. Ben took DDAVP for about six or seven months in middle school, he says, but stopped after it caused incessant morning headaches—a common side effect—and only “sort of” worked. “I would wet the bed maybe three or four times a week instead of five or six,” he says. Rhee describes DDAVP as “a band-aid”—good to help improve the odds of a dry spell for a vacation, summer camp, or sleepover, but “certainly not a long-term solution.” There are other drugs, like imipramine and bladder-relaxing anticholinergics, that work similarly or boost the efficacy of DDVAP, but the results are often the same.

By the time kids and teens have made it through this gauntlet of treatment, getting their hopes up time and time again, many shift their focus to accepting life as a bedwetter. They have a system, and know what works for them. “Once I moved on to coping and acceptance, actually ordering the right [incontinence] products and dealing with it, I actually felt a lot better about it,” says Sam.

Daily management of nocturnal enuresis varies, and can look dramatically different depending on how often someone tends to have an incident. For some, diapers and pull-ups remain a nightly routine. “I know when I go to sleep that I will wake up wet,” says Sam. “When my brain goes to sleep, everything else goes to sleep.” Others end up playing a sort of Russian roulette with their own bodies, wondering if it’s worth the effort and cost of wearing protection each night just to catch a dozen or so wet mornings each year. For these people, waterproof mattress protectors are a popular solution.

Feeling “really, really pathetic”

Sam felt like he’d just finally made peace with his nighttime routine when he began to experience daytime incontinence three years ago, at age 26. Developing daytime incontinence is a small but present risk for those with very frequent PNE, and can indicate a more bladder-specific origin for both issues. The change was devastating to the self-esteem he’d worked hard to regain—in large part because it meant he had to begin wearing disposable underwear-style pull-ups to work. “Having those issues in the day just brought back all the negativity,” he says. After being out all day in pull-ups, “when you get ready for bed and you change out of that into a nappy, you just feel pathetic. Really, really pathetic.”

The primary social challenge that adult bedwetters face is simply that incontinence, in all forms, is seen by many as exclusively juvenile—and it all comes back to the diaper. “People hate that word,” says Bob. “We have all kinds of euphemisms for it.” There’s the less weighty “nappy,” from Sam’s side of the pond, and the sterile adjectives “disposable” or “reusable” are used sometimes on forums in place of the item itself. Many incontinence websites that sell the products for adults call them just “underwear,” with photos and packaging doing most of the work of differentiation. There is simply no way, bedwetters say, to put on a diaper without feeling infantilized, embarrassed even when there’s nobody else in the room. The market for adult diapers and pull-ups is mostly aimed at the also-belittled geriatric population, and those that look more stylish or are marketed in more dignified ways are often prohibitively expensive for someone who needs them regularly. Even basic diapers bought in bulk come out to around a dollar apiece. Some people who wear them during waking hours easily go through three or more a day. Pull-ups are generally considered to be a bit more emotionally tolerable than bulkier traditional diapers with adhesive tabs, but don’t always provide the tight seal that some people require.

Any bedwetter can tell you where the humiliation they associate with diapers comes from. It’s in the way we toilet train children. And nearly everyone cites the exact same phrase: “Babies wear diapers.”

“We shame children out of them,” says Sam. We appeal to childrens’ desires to grow up, to grow out of diapers. We ask them, “you don’t want to be a baby, do you?” Wearing a diaper can mean not only feeling like a baby, but being treated like one, too. This applies to almost anyone who struggles with any form of incontinence at any age. Among the elderly, more so than other consequences of aging, losing the ability to “hold it in” is a one-way ticket to infantilization. It’s a violation of the adult contract.

Sam feels hurt when he hears bedwetting associated with childlike qualities like immaturity and laziness. “I feel simultaneously too old for this and too young for this at the same time,” says Sam. “I’m 29—I’m meant to be in my prime.”

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