Melissa, a Bethesda resident who asked that her real name not be used, knows very well the fear and embarrassment commonly felt by people suffering from trichotillomania.
“I didn’t like being in pictures; I would tense up every time anyone said ‘eyebrows,’ ” she says. A couples therapist in her mid-20s, Melissa would like to be open about her continuing struggles with the disorder but worries that could damage her career. “Unfortunately, there is still a stigma around this,” she says. “It feels a lot easier for people to come forward and say, ‘I have anxiety.’ ”
Like Crupi, Melissa began pulling out her hair during middle school, leaving bald spots on her scalp and eyebrows. She doesn’t recall any of her friends mentioning the missing hair, but she remembers being ashamed nonetheless. Her parents hoped visits with a psychiatrist would help her stop. “I was put on some medication—not quite sure what—that I hated, and I didn’t think it helped,” she says.
Once she started high school, Melissa stopped pulling out her hair and thought she had put the behavior behind her. “I would occasionally pull, but honestly just thought of it as a bad habit,” she says. In graduate school, she began pulling again, which she attributes to stress and long hours of studying and reading.
Experts say people with BFRBs, unlike those diagnosed with OCD, don’t feel compelled to do something they don’t want to do. Instead, they enjoy the physical sensation created by their behavior—the “zing” that Crupi described feeling as a young girl. For some people, engaging in the behavior provides a way to soothe themselves when they’re stressed or tired—even though it ultimately results in negative feelings.
“It interferes with my ability to get my assignments done,” explains Derek, a 20-year-old University of Maryland kinesiology major from Bethesda who asked that his real name not be used. He finds himself pulling hairs from his scalp while sitting at his desk in his dorm room or studying in the library. He says his mom remembers him pulling “a little bit” when he was a preschooler, but it wasn’t until high school that the habit became more obsessive. “I say to myself, ‘Stop doing that.’ And I get a little upset and angry,” he says.
Derek is participating in a research study at American University in Washington, D.C., that is testing methods to help people with trichotillomania, including a therapy developed by Mansueto and his colleagues called comprehensive behavioral treatment, or ComB. The therapy focuses on recognizing and addressing the triggers that cause people to engage in BFRBs. For example, sufferers may find that they are more likely to pull, pick or bite at specific times—like when they are watching TV or sitting in a car—or when they are feeling particular emotions. Like Derek, Melissa noticed herself pulling more when she was anxious about taking an exam or writing a paper for school. Crupi says boredom or exhaustion are her triggers—she eventually recognized that the plucking would get worse while she was watching TV or reading at night.
Before making those connections, though, Crupi tried all sorts of treatments. When she told her husband about her disorder, he suggested that she should see a psychiatrist. The doctor prescribed Prozac, which didn’t help curb the hair pulling, Crupi says. She tried other methods, like wearing Band-Aids on her fingers—the sensation of the Band-Aids on her scalp was supposed to serve as a reminder not to pull—or holding a pencil to keep her hand occupied. Those failed when her young daughters, now teenagers, would ask if she had hurt herself, or why she needed to hold a pencil while driving. Hypnosis and acupuncture didn’t help, either.
While she never pulled out so much hair that she had to wear a wig or use makeup to draw on her eyebrows, as some people with trichotillomania do, her behavior exacted a heavy emotional toll. “I always had this feeling that I’m not good enough. Part of that was because I couldn’t control the hair pulling, and that led to thinking I’m not good enough at other things,” Crupi says.
About 10 years ago she discovered the Behavior Therapy Center of Greater Washington through the TLC website. She signed up for group therapy, joining about eight other people with BFRBs. In addition to providing the support of peers, the group therapy sessions introduced her to ComB, the method developed by Mansueto and his colleagues. It was the first time she felt good about a treatment plan, and the first time she found one that she felt worked.
“It was the best thing ever,” Crupi says. But because she still lacked the complete awareness of what triggered her to pull and no longer had a group of peers to encourage her, she relapsed soon after the group sessions ended. She tried to find another group to join, but at the time the center didn’t have enough people interested in participating to offer the therapy again.
Crupi continued to pull out her hair, having become more adept at hiding the behavior from her children by pulling from all over her scalp to avoid creating noticeable bald spots. She didn’t tell her daughters about her disorder, forbidding her husband from doing so when he suggested it. She surreptitiously dropped hair behind the bed when she pulled at night, making sure she was the one to clean up the bedroom so her family wouldn’t notice. When someone commented on her habit of playing with her hair or chewing on a strand—something she often did after pulling one from her scalp—she would immediately withdraw and assume she was being judged, even if the person was making an innocent observation.
Mansueto says others often underestimate the shame and isolation felt by people with body-focused repetitive behaviors. Most people pull a hair, bite a nail or pick at dry skin every so often, without experiencing any of the negative emotions described by people with BFRBs.
“It’s such a human thing; we’re all nibblers and biters and scratchers and pullers,” Mansueto explains. “When I’m watching a football game that I really care about, I need popcorn there or I’ll start nibbling on my cuticles.”
But the difference between his nail-biting and what his patients go through can be stark, he says. BFRBs can stress or end relationships and careers. “It’s really much more tragic than it seems, because people’s lives have been altered,” he says. “It seems like just another thing like nail-biting, but this really ruins lives.”
Nearly four decades after the first time she pulled out a strand of hair, Crupi was still searching for ways to stop when she read about Keen, a bracelet and smartphone app designed to help people with BFRBs. Created by a Minnesota woman with trichotillomania and her husband, Keen works by recognizing the arm motions associated with the behavior and vibrating to alert the user. In some ways, the smart bracelet is similar to less technological methods such as wearing Band-Aids because it doesn’t stop someone from pulling out a hair or chewing on a cuticle; it simply makes users aware of the behavior. The app tracks each time the bracelet is activated, letting users measure their progress at curbing their behavior.
Crupi started using Keen in 2017 and immediately began recognizing the triggers, such as boredom or exhaustion, that she says lead to her pulling. “I started to notice what was going on and I started to notice what I was feeling,” she says.
Keen is among a number of available technologies claiming to help people with BFRBs, including Slightly Robot, a bracelet that works in a similar way as Keen, and apps such as TrichStop or SkinPick. Mansueto is quick to point out that no single treatment seems to work for everyone. Products like Keen are only part of the solution, he says.
“[People] see a device and they think it’s going to be a magic device,” he says. While increasing awareness of behaviors and measuring progress can be important, there are other pieces of the puzzle that need to be addressed, he says. How well Keen works may be better known soon; in 2018, NIMH awarded a $300,000 Small Business Innovation Research grant to its creators, who are partnering with a leading trichotillomania researcher at Marquette University in Wisconsin to study the device’s effectiveness.
Crupi typically wears a bracelet on just one arm. She says she is nearly 100 percent “pull-free” and has opened up to her daughters and her friends about her disorder. She now works as the director of business development and awareness for HabitAware, the Minneapolis-based company that sells Keen. She also has become more confident and passionate about sharing her story and helping to reduce the stigma associated with body-focused repetitive behaviors.
“Before, I would hide. I would never want anyone to know what my disorder is because I was embarrassed,” she says. “Now I’m loud and proud.”
Michael S. Gerber is a writer and consultant in Washington, D.C.