“It’s been like living like a monster in a cage, a caged animal, for the past 50 years of my life,” said Bill. “It’s affected every aspect of my life, from childhood to adulthood.”
“It was making me miserable,” said Richard. “I can’t enjoy the things I want to.”
“It destroyed the relationship I had with my father; it destroyed the relationship I had with friends,” said Russell. “It destroyed my ability to go out and participate in athletics.”
The unnamed “it” is paruresis, and in an era when it seems every possible human condition is regularly discussed in public, most readers are no doubt unfamiliar with the term. Also known as “bladder shyness,” paruresis is the inability to urinate in public bathrooms, or even in a private bathroom while others may be somewhere nearby.
“Hardly anybody who doesn’t have it knows about it,” said David Carbonell, a clinical psychologist in Chicago specializing in anxiety disorders. “This is one of those conditions people have an inordinate amount of shame about.”
The subject is so sensitive, all patients I spoke with asked for anonymity, so I use a pseudonym for anyone I identify solely by a first name.
This shame causes sufferers to lose relationships and jobs because they refuse to go into situations — dates, business trips — where they aren’t certain of having access to an utterly private bathroom.
Paruresis is obsessive, vastly magnifying the significance of the bathroom process. You might think that an airplane toilet is private, for instance. But a person with paruresis fixates on the walk down the airplane aisle to the bathroom, passing other passengers who might judge them.
“I’ve worked with some people who needed a catheter to go on an airplane,” said Carbonell. “This is a crusher for their social life. If they go to a party, they arrive late and leave early. There are kind of elaborate excuses why they can’t take somebody to a movie. ‘What if I need to get up and use the bathroom?’”
The disorder isn’t something those coping with it feel they can discuss.
“It’s the secret phobia, that’s what it is,” said Tim Pyle, executive director of the International Paruresis Association.
Pyle is also the executive director of the American Restroom Association, which is how I met him over the summer. The ARA was using the COVID crisis to push for bathroom redesign that reduced the spread of disease and encourages privacy. Curious as to whether the organization might be some kind of covert effort by Kohler to push fixture sales, I started looking at the ARA board members, and realized the ARA is something of a stalking horse to promote a more paruresis friendly world. The opening sentence of the ARA website speaks volumes:
“American Restroom Association’s (ARA) goal is nothing less than a full-scale toilet transformation in this country so that our public restrooms are no longer a laughingstock among the developed world.”
That attitude — the world cares about, never mind mocks, America’s public restrooms — is at the core of the condition. That conviction that others notice and care about your urinary habits can be difficult even for professionals to accept. Carbonell has treated about 100 people with paruresis and still finds himself occasionally amazed.
“I’ve been doing this a long time,” he said, “and still sometimes metaphorically pinch myself, realizing how far they’re taking these beliefs.”
Sharing their attitudes with others is the first step toward recovery.
“We work every day with people who this is a huge impact on their quality of life,” said Pyle.
That work involves individual counseling and group sessions such as the Zoom call I sat in on, where sufferers open up about their experiences in a way reminiscent of Alcoholics Anonymous meetings.
“I was hopeful that somewhere there was a button you could push in your brain and make it go away,” said Steve. “So I didn’t have to spend any time thinking about when I had to pee and where I would do it.”
“Every time I hear people’s stories it helps me with my story and my feelings,” said Pyle, for whom becoming head of the IPA was something of a coming out.
“I had to man up and tell everybody what my job was,” said Pyle, while telling himself “because I am not successful in public restrooms does not mean I am any less of a man.”
Traditional concepts of manliness intensify the embarrassment around paruresis.
“It occurs much more frequently with men,” said Carbonell. “Not to put too fine a point in it, men take a lot of pride in their penis and its functioning and it seems an ungodly, unmanly thing, about which they have real concern being ridiculed, being disparaged, looking weak.”
The COVID pandemic shutdown offered relief to people with paruresis, by curtailing difficult social and work situations. It also made treatment easier; they could attend remote Zoom sessions rather than wait for an in-person seminar. Now the prospect of society opening up, of people returning to work, can be very daunting.
The good news is, people do get better.
“Most of the anxiety disorders are treatable,” said Carbonell. “The biggest obstacle is helping people get past the shame. As long as they view it as this terrible flaw, a shameful, disgusting experience, it’s hard for them to get treatment.”
“My paruresis is 90% recovered,” said Dan Rocker, a New York clinical social worker and vice president of the IPA. “On most days, and in most circumstances, it isn’t a problem anymore.”
Rocker, led the Zoom meeting, and has a message for people dealing with paruresis.
“You are not alone,” he said. “If you look around, there are a bunch of people here. You are never alone by having an anxiety disorder. ... At no other time in American history are you more likely to disclose your anxiety to someone else who also happens to be suffering from some kind of challenge that they would probably be happy to discuss with you, If you’ve been keeping it under wraps, as most of us had in the course of our struggles, now is a good time to reconsider that position.”