Ellen Crupi can easily recall when she first pulled out a strand of her long dark hair in the same way some people might remember their first kiss or losing their first tooth. She was 12 years old and in gym class at her suburban Rhode Island middle school, waiting for teams to be chosen. She was not particularly popular or good at sports, so it wasn’t her favorite time of the school day.
“I was probably just playing with my hair to calm myself down, and I pulled a piece out. I don’t know why,” says the 54-year-old Crupi, who lives in the Westgate neighborhood of Bethesda. “Ever since that moment, I was hooked. I just felt a zing.”
Pulling out her hair became a coping mechanism for Crupi, a way to tackle anxiety or even boredom, and nothing she was too concerned about at first. It wasn’t until a few weeks later, when the hairdresser cutting Crupi’s hair discovered bald spots behind her ears and showed them to her mother, that she realized she might have a problem. With her mother and the hairdresser looking down at her, she quickly thought up an excuse. Her friend Anne put gum in her hair, she told them. “That’s when I learned there was something wrong with me,” she says. It was the beginning of four decades of fearing that someone would discover her secret.
Crupi was usually able to hide her habit by styling her hair so her bald spots weren’t noticeable. Even when she wasn’t actively pulling, she was thinking about whether someone would notice the bald spots. When she told one of her closest friends in college about pulling out her hair, the news ended the friendship. More than 30 years later, the memory of being called “disgusting” by her friend is so vivid that she remembers exactly where she was (Armand’s Chicago Pizzeria in College Park) and what she was wearing (velvet pants and an “ugly” sweater).
It wasn’t long after, in a psychology course she was taking at the University of Maryland, that Crupi learned about trichotillomania, a disorder defined by repeated hair pulling that results in significant hair loss. It was the first time she realized that her habit was actually a mental disorder and that there might be other people like her who were suffering from the same feelings of shame, anxiety and frustration. Despite the revelation, she felt she had learned her lesson about disclosing her condition when she opened up to her friend, so Crupi didn’t tell anyone other than her husband until a few years ago.
Decades after learning about the disorder, Crupi calls herself a “recovering trichster,” using the nickname adopted by people who are dealing with trichotillomania. Researchers estimate that as many as 3.6 percent of adults suffer from the disorder, and it is thought to be more common in women than men. Experts say that young children usually grow out of it, but preteens and teens who start pulling their hair often continue into adulthood. Like Crupi, most people with trichotillomania say they first pulled around age 12 or 13, according to experts.
Trichotillomania falls under the broader category of body-focused repetitive behavior (BFRB) that also includes dermatillomania (skin picking), onychophagia (nail biting) and other similar disorders. A person doesn’t necessarily have one of these conditions just because they nervously chew their nails or pluck a hair. But when behaviors begin to interfere with daily life and cause distress, clinicians diagnose them as BFRBs. Although the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders lists trichotillomania under Obsessive-Compulsive and Related Disorders, experts say there are distinct differences between OCD and BFRBs, and that treatments and medications for OCD don’t work reliably for people with trichotillomania or related diagnoses.
People who pull their hair or pick their skin to the point of causing physical or psychological harm also don’t necessarily have a deep-seated emotional problem or history of trauma. “None of those sort of…Freudian-type notions seem to hold up,” says Charles Mansueto, founder of the Behavior Therapy Center of Greater Washington in Silver Spring and one of the few experts on body-focused repetitive disorders. “It doesn’t seem to be associated with trauma or abuse, sexual or physical, and doesn’t seem any more likely to result from those kinds of other conditions. It seems to come much more seductively into the lives of people who are together, and sometimes people who aren’t so together.”
Mansueto began researching trichotillomania more than three decades ago. Researchers at the National Institute of Mental Health (NIMH) in Bethesda were studying OCD and searching for subjects, and several people came forward wondering if their hair-pulling habit qualified them to participate. At the time, Mansueto was studying nonpharmacological treatments for OCD, and his colleagues at NIMH asked him to work with these research subjects as well. He presented the results of his research at a conference in San Francisco, where he met Christina Pearson, the founder of the Trichotillomania Learning Center, now known as The TLC Foundation for Body-Focused Repetitive Disorders.
Pearson asked him to serve on the fledgling organization’s scientific advisory board, telling him, “We need scientists and doctors to work with us because we’re sufferers,” says Mansueto, who continues to serve on the board.
While there are more researchers interested in studying BFRBs, the number remains small, TLC Executive Director Jennifer Raikes says. The foundation recently raised more than $2.5 million to fund the BFRB Precision Medicine Initiative, a study involving more than 300 participants at four sites. Researchers hope to identify genetic and biological patterns that will help determine why some people respond to certain treatments better than others.
“Not a lot of research money has gone into this field. That is why we have so many of these questions,” Raikes says. “We’ve been trying to change that.”
While supporting research has been a priority of TLC from the beginning, its core mission has always focused on the people who suffer from trichotillomania and similar disorders. With the growth of the organization and the power of the internet to connect people and raise awareness, those living with a BFRB now have access to more resources than Crupi was able to find decades ago while searching microfiche in her university’s library.
“From the start, we knew the science was important, but really, so much of the suffering from these disorders is from shame and isolation,” Raikes says. “It’s never going to be fun to have missing hair and have scars all over the body…but by bringing people together there’s so much healing that can happen right now, regardless of where the field is in terms of treatment.”