Katherine Paris wore a wig throughout most of high school. As soon as she got home, she’d take the wig off and pull out her own hair before it could grow back.
Paris suffered from trichotillomania, or compulsive hair pulling. For a long time, she tried to hide her condition, convinced that no one else could understand.
People with trichotillomania repeatedly pull out hair from their scalp, arms, legs, eyebrows, eyelashes, and genital areas. The resulting hair loss can have serious physical and emotional consequences. Once labeled as an impulse control disorder, trichotillomania now is considered an obsessive-compulsive disorder.
For Paris, who started pulling at about 12, the emotional consequences in middle school were significant. She felt bullied and misunderstood, ashamed of a problem that neither she nor her mother knew how to solve.
The Struggle to Find Help
“My mom was the one who decided we needed to get help,” Paris says. “She had no idea where to take me, so she took me to a dermatologist, thinking that would be the best bet.” The dermatologist could identify the trichotillomania based on his research, but he couldn’t offer a treatment.
Indeed, families often struggle to find help. Although awareness of the condition is increasing, doctors and therapists don’t know how to approach trichotillomania, says Houston-based psychologist Suzanne Mouton-Odum, PhD, co-author of the book A Parent Guide to Hair Pulling Disorder: Effective Parenting Strategies for Children With Trichotillomania. “The provider gets frustrated, the patient gets frustrated, and everyone walks away unhappy,” she says.
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Approaching trichotillomania as an anxiety disorder or treating it with antidepressants won’t work, Dr. Mouton-Odum says. Neither will the way many parents and loved ones try to help: by simply commanding, demanding, and negotiating to try to stop the hair pulling.
“The therapy of choice is the comprehensive behavioral model,” she says. “It addresses a variety of internal and external cues. The therapist can get that information and then select coping strategies that are best for those cues.” Behavioral therapies with a focus on retraining habits are at the top of the list of therapeutic options, according to a report in Current Psychiatry Reports that reviewed current knowledge of diagnosis and treatment options.
Mouton-Odum emphasizes that trichotillomania is treatable, but treatment means work.
“To me, the biggest predictor of doing well in treatment and getting better is being ready to sit through the discomfort of experiencing an urge and not acting on it,” she explains.
Creating a Fresh Start
For Paris, while she and her mother sought a therapist with the appropriate expertise, she continued pulling. “In the beginning, it was definitely mindless,” Paris says. “And then, as it became more of a coping mechanism, I would use it if I was under a lot of stress. I did a lot at night, before I would fall asleep, like a pacifier.”
By middle school, she was bald and wearing hats to cover her head. Despite her efforts to hide, she says that everyone seemed to know her as the girl who pulled her hair out. “I lost a lot of friends,” she says. “I became shut in. I knew people were going to stare at me, so I didn’t go out.” After middle school, she moved to a private high school and begged her mother for a wig so she could have a fresh start.
“I wore a wig up until my senior year,” Paris says. But, by that point, she was in therapy and had found the Trichotillomania Learning Center, an organization that offers information about the condition as well as treatment options and resources. As part of her recovery, she also learned to use fidget toys, such as manipulative puzzles, to keep her fingers busy and started to try new activities in order to find out what she enjoyed doing.
She also used social media to connect with other people who had trichotillomania and share her story, emphasizing that trichotillomania is a treatable medical condition.
“Coming out and just saying it openly like that isn’t something everyone is comfortable with, but keeping it a secret is not the way to go, I’ve found,” Paris says.
At 19, she has been pull-free for a year and a half — and she lost more than 100 pounds by replacing her compulsive hair pulling with running as a way to cope with stress. She’s also become very open about having trichotillomania and is an advocate for awareness on her campus