I feel the urge again. My fingertips run along my face, feeling for imperfections, and I slip into the bathroom to be alone. After a glance in the mirror, I stalk back out, my nails digging into my palms. Not today.
Since my adolescence, I’ve had a tumultuous relationship with my reflection. That’s because I suffered from trichotillomania, or hair pulling, and currently struggle with its cousin excoriation disorder, dermatillomania, or skin picking.
Trichotillomania and skin-picking disorder are referred to as body-focused repetitive behaviors, an umbrella term for self-grooming behaviors that result in damage to the body.
But the difference between everyday fidgeting — say, occasionally playing with a hangnail when you’re antsy — and BFRBs, is that the behaviors cause clinically significant distress or interfere with daily functioning. A day at the spa, or on the beach, for instance, would only lead me to wonder how I’d hide my scarring.
Despite attempts to stop, people can pull or pick for long periods of time and even miss school, work, or outings.
And there is no long-term cure for either disorder.
One study suggests that around 13 percent of adults in the U.S. engage in at least one BFRB. But a non-profit organization dedicated to the cause gave me more conservative figures. Per their research, an estimated 1 to 2 percent of the population has trichotillomania and about 1.4 percent has skin picking disorder.
That still makes them two of the most common BFRBs, which may affect more than 10 million people in the U.S. alone.
Since these disorders are sometimes comorbid, meaning a person can have both at the same time, figuring out how many people have them it isn’t quite as simple as adding the two statistics together, says Jennifer Raikes, executive director the TLC Foundation, the BFRB focused non-profit.
There’s also a range of severity of these disorders. “For some people, they’re relatively minor, and for some people, they’re really life-warping and potentially dangerous,” Raikes adds.
Skin pickers can run the risk of infection. There’s also a subset of individuals who swallow pulled hairs, which can potentially cause gastrointestinal injuries from undigested hairballs that can require surgery to remove.
Some people, myself included, experience feelings of isolation and confusion. Many of us believe, falsely, that the behavior is uncommon.
That’s why, when I first found other women who shared my afflictions, I was astounded to hear them talk about the same feelings I’ve harbored in silence since I was a teen. We aren’t using their last names to protect their privacy.
“The shame with this is excruciating,” says Mary, who is in her 50s.
“It’s not just a bad habit, something you could stop if you just tried hard enough,” she says. “I almost feel like there is some kind of electrical buzz in me that it helps discharge. And living with that buzz is intolerable.”
I, too, feel that buzz.
For others, like Nina, who is in her 40s, picking can strain relationships. “When I was younger, it really upset all the people around me,” she says. “Nobody could understand that it was not something that I had a lot of control over.”
Mary says she has felt similar pressure. “My husband is frustrated beyond belief that I can’t just stop, and constantly nags me to ‘let it heal.’ It is a source of constant tension.”
Though body-focused repetitive behaviors tend to begin during adolescence, they can start at any time, including childhood. It’s not entirely clear why some people develop BFRBs, though research suggests that people may have an inherited predisposition for the disorders.
Women tend to be more likely to be sufferers, though it’s possible that men under-report their afflictions.
And from an evolutionary standpoint, we’re not the only species that exhibits these problems: Mice will pull their fur out. Birds pull their feathers. Dogs lick their paws to the point of irritating them.
A number of internal and external triggers can spur BFRBs, such as anxiety, stress and boredom. Some are driven by personal beliefs, like the thought that pulling or picking may make an area smoother.
Others do it in specific circumstances, like when they’re lying in bed, driving their cars or working at a computer. Many, like myself, rely on solitude and mirrors.
And sometimes when sufferers pull or pick, they don’t even notice that they’re doing it. The behaviors can also become more focused and routine because of the immense satisfaction or relief that they bring.
The more I spoke to people with these disorders, the more it became apparent that it’s a different experience for everyone.
Mary tells me she didn’t leave the house without concealer. Nina tells me manicures help her picking and that her urge dissipated over time once her life settled down.
But we all have one big thing in common: Despite our best efforts, we cannot completely stop. These women tried everything from wearing hats and gloves to cognitive behavioral therapy to deter pulling and picking.
A neurological condition
“This is a neuropsychological condition, really a neuropsychiatric condition, much the same as obsessive-compulsive disorder,” says Dr. Ira Halper, psychiatrist and director of the Cognitive Therapy Center at Rush University Medical Center in Chicago.
That leads me to perhaps one of the more contentious aspects of hair pulling and skin picking: their classification in the Diagnostic and Statistical Manual of Mental Disorders, the standard reference of mental health diagnoses.
Trichotillomania and skin picking were only recently recognized under Obsessive Compulsive and Related Disorders when the American Psychiatric Association published the DSM-5 in 2013. Up until that point, trichotillomania had been considered an impulse-control disorder along with kleptomania, pathological gambling and pyromania.
“I don’t think that the classification as a related disorder is entirely off-base, but I do think it’s confusing,” Raikes says. Though trichotillomania and skin picking disorder are related to OCD, she says, that doesn’t mean that the disorders are a form of it.
“The distinction is important because if they are too closely equated, it can result in receiving ineffective treatment,” she adds, meaning people will seek help for OCD rather than BFRBs.
“I always use the analogy, it’s like a distant cousin,” says psychologist Charles Mansueto, founder and director of the Behavior Therapy Center of Greater Washington. Mansueto is also on the TLC Foundation’s scientific advisory board. “It’s not unrelated. It just is not identical with or even a close sibling of it. It has its own characteristics. It requires its own treatment.”
“In the history of psychiatry, this is nothing,” he adds. Schizophrenia, for example, has been studied for over a hundred years, whereas hair pulling and skin picking are just now being recognized, “This is so new.”
“A lot of people misdiagnose [skin picking] as OCD,” says Suzanne Mouton-Odum, a psychologist who helped create StopPicking.com, an interactive program for excoriation disorder that helps identify a sufferer’s internal and external cues and shares coping strategies. Mouton-Odum is also on the TLC Foundation scientific board.
“What’s so different about treating these behaviors is you really have to get to know the person, and you have to understand what their triggers are for the behavior and really work with that,” she says.
Though treatments exist, they have shown to only be moderately successful.
The current treatment of choice is called cognitive behavior therapy, an approach that hones in on problematic thoughts, feelings and behaviors. Some of the most successful approaches train patients to recognize what prompts them to pull or pick and replace it with something else, like balling hands into fists.
There’s also the comprehensive behavioral model, developed by Charles Mansueto and his colleagues. The ComB model helps patients self-monitor to pinpoint triggers in five areas (sensory, cognitive, affective, motor and place) and then tailor an intervention. If smooth skin is the goal, for example, a therapist may advise carrying around a smooth stone to touch to mimic the sensation. If you require a mirror, like me, you may be advised to cover it or keep your lights dim. This model also uses barriers like medical tape and Band-Aids to make patients more conscious of when they pull or pick.
And, even though selective serotonin reuptake inhibitors are commonly prescribed to combat hair pulling and skin picking, there’s increasing interest in an amino acid called N-acetylcysteine. One study showed that NAC helped lessen urges for more than half of participants. “That’s the closest thing we have to a magic bullet,” says Mouton-Odum.
Though the fight to understand and treat these disorders feels Sisyphean, especially because little federal funds have been devoted to them, the TLC Foundation has a huge research study underway.
The BFRB Precision Medicine Initiative is being led by investigators from UCLA, the University of Chicago, and Massachusetts General Hospital. The study will investigate the clinical, biological and genetic underpinnings of body-focused repetitive behaviors and collect data that will form the basis for more effective treatments.
“To understand these problems is to understand being human and that we all are in the same boat,” says Dr. Mansueto. “Join the club of humanity.”
I step back into the bathroom, this time a little more confident in my ability to reckon with my disorder because I know that I am not alone.
Kasia Galazka is a freelance science writer who has written for BuzzFeed, Psychology Today, Pitchfork and Paste. Follow her on Twitter: @supergalaxy.