June 11, 2001 -- Your friends are planning a day out at the ballpark, or the museum, or the mall. You'd love to join them, but instead, you make up an excuse and decline. You feel ashamed, unhappy, and utterly alone, but you will not reveal your secret: an inability to urinate in public restrooms that won't let you stray too far from home.
If you're one of the 17 million Americans with shy bladder syndrome, or paruresis -- especially if you're one of the estimated 1 to 2 million whose social and professional lives are severely hampered by it -- the scenario is all too familiar. If you're not, you're probably a bit baffled. You may even be laughing. But SBS is anything but funny to those struggling with it.
"Shy bladder syndrome is considered a social phobia by [mental health professionals], because the person who has it knows it's irrational," says Steven Soifer, MSW, PhD, author of the new book The Shy Bladder Syndrome: Your Step-By-Step Guide to Overcoming Paruresis.
"It's this awful feeling that even if someone held a gun to their head, they couldn't go," says Soifer, a professor of social work at the University of Maryland and president of the International Paruresis Association.
In the workshops he conducts, Soifer has "talked to people who've held their bladder for 12, 16, 20 hours because they could not find a 'safe' bathroom. Unless you've experienced it, it's difficult to understand how this can be."
Soifer understands, because he's been there himself.
"People [with SBS] get anxious and fear that others may be watching, listening, or waiting," he tells WebMD. "It's a classic mind-body problem. If you perceive danger, your body reacts in certain ways. For people with paruresis, the internal sphincter shuts and urination is impossible."
The Seeds of Shy Bladder Syndrome
Granted, almost no one prefers a public facility over the comfort of home, but for most people, if you've gotta go, you go. It may not be pleasant, but it is certainly not frightening. So why do paruretics, people with SBS, feel afraid?
While some paruretics trace their first symptoms to emotional, physical, or sexual abuse, and others to a particularly anxiety-provoking toilet training experience, the vast majority blame a specific, traumatic event in early adolescence.
"The typical story is of being teased, harassed, or hurried by classmates at a sensitive age, usually around puberty, while trying to use the restroom," says Soifer. To keep from feeling that anxiety again, the person avoids public bathrooms, a behavior which ultimately becomes ingrained. Eventually, it's no longer a choice. The person is physically unable to urinate in public.
While both sexes are susceptible to paruresis, "nine of 10 who come in for treatment are men," says Soifer.
Our society is difficult for anyone prone to paruresis, but particularly for men, says Tom Seehof, a 75-year old recovering paruretic who suffered silently for years, but now runs the California branch of the IPA's support group network.
"The discussion of bodily functions is stigmatized in this country more than others, and yet our men's rooms do not allow for privacy," he tells WebMD.
The ramifications of SBS can be truly devastating, he says.
"First, you feel you're the only one who has it," says Seehof. "You're all alone, you come to the conclusion that you're crazy, and quite often you become depressed."
The result, he says, is that "people with paruresis are very isolated and ashamed, and don't seek help. The symptom becomes the center of their life."
Although paruretics are initially ashamed and don't want to talk about their condition, it's essential to treatment that they do. Once they summon the courage to initiate treatment with a therapist or urologist, "it's a rare case that cannot be helped," says Soifer. "It's actually relatively easy to treat. We do a form of cognitive behavioral therapy, called graduated exposure therapy, where the person is gradually reintroduced to the feared situation."
Graduated exposure therapy could go something like this, Soifer tells WebMD: The therapist has the patient attempt to urinate while a friend waits at a comfortable distance. At first, that could mean in an entirely different building, or down the street. Each time, the friend moves a bit closer, until the patient is able to relax and let go with someone in the next room, then with someone standing right outside the door, and eventually, in a public facility.
Typically, he says, 8-10 weeks of therapy is enough to make a real difference, and many can see significant improvement after only a weekend workshop.
"There are exceptions, of course," says Soifer -- especially for the one-quarter of paruretics with co-existing problems such as depression or panic attacks.
"Sometimes, medication to reduce anxiety is helpful," he says. "The drugs can make the graduated exposure therapy go more easily."
For Seehof, the key to recovery was separating the basic human need to urinate from the complex emotions that had grown up around it. He learned "to focus on the physical, keeping the emotional at bay long enough to do what I need to do."