It can start with just a few strands of hair, an eyelash or two. But before a person knows it, Trichotillomania — the incessant urge to pull one's hair out — can become an all-encompassing disorder.
While the condition is remarkably common, even experts say they have more questions than answers about the disease: For example, no one knows why adult women are disproportionately affected by the disorder.
"It's extremely embarrassing and self-defeating," a 24-year-old survivor, who still struggles with Trich, told Revelist. "I've thought about shaving my head and starting over, I've tried wigs, but there is no hiding from yourself."
Much of the shame survivors feel stems from the lack of education about Trichotillomania — that their illness isn't a moral failing, and that help is available to them.
Revelist spoke to Jennifer Raikes, executive director of the TLC Foundation for Body-Focused Repetitve Disorders, about what survivors and their loved ones should know about Trichotillomania.
1. Trichotillomania is different than the occasional hair pulling.
There's a strong distinction between having a "habit" and living with a full-fledged disorder, Raikes told Revelist.
"Trichotillomania is a mental health disorder when you have the compulsion to pull out your hair to the point where it’s causing you distress, or where it’s disrupting your life in some way," she said. "It could be your head hair, it could be your eyelashes, it could be your eyebrows. It could be pretty much any hair on your body, the most common being head hair."
Many sufferers don't even realize the consequences of the disease.
2. Trich is usually comorbid with other mental health issues.
"Trich often coexists with a number of different problems, like anxiety," Raikes said. "Sometimes [it coexists with] depression, sometimes body-focused repetitive disorders, like skin picking disorder, which is very similar to hair pulling."
3. The typical age of onset is between ages 9-13.
Many who struggle with Trich start pretty early.
"I first started pulling out my hair during high school, I don’t know why I started it just seemed to calm me down when my anxiety would kick in," Maggie (name changed), who is 24, told Revelist. "It’s a strange cycle though because I would start picking my scalp and pull my hair out in one spot — usually where I could easily hide it."
Maggie, who still occasionally struggles, said Trich can quickly become a vicious cycle of relief and grief.
"I would find one particular hair that had a root on it, and I would feel a sense of release. Then I would realize how much hair I had plucked out and my anxiety would get worse."
4. Adult women are diagnosed with Trich twice as often as adult men.
"Trich tends to start in childhood, especially post-puberty when the highest number seem to be women," Raikes said. "This could be related to hormones...currently, our org is trying to get more answers."
Though women are disproportionately affected by Trich, people of all genders can struggle.
"I began pulling my eyelashes when I was 8, which later progressed to tweezing body hair," "Jamie," (name changed), a genderqueer person from New Jersey, told Revelist. "I am not sure when it started, but it was around the time that I was molested. [It] intensified after being kidnapped by parent."
5. Parents are typically the ones who find out about their child's struggle with Trich.
Because there's so little information about the disorder, many children and preteens have no idea that they're engaging in harmful behavior. A parent or guardian will typically notice a problem before they do.
"These problems often start in childhood, so it’s often the parents who are helping the child to find help," Raikes said. "But one of the big barriers to anyone getting help is that [Trich] is not well-known. [Trich is] really common, but it's not well-known."
"I think that’s because we feel ashamed…and we think they’re our fault," she added. "Often, it’s people’s biggest secret."
6. Hair pulling is just one battle for those with Trichotillomania fight every day.
Trich survivors tend to feel enormous guilt about their disorder and will do anything in their power to "hide" bald spots or missing lashes. This can add another dimension of stress to a person's life.
"In addition to all the time a person spends doing the
behaviors, there’s also the shame and the hiding…the ways in which we adapt our
life in order to not reveal these problems," Raike told Revelist. "Many experts are not trained in these problems, so it’s
really up to the parents to educate themselves."
7. Recovery is possible, and help is available.
Raike's organization educates sufferers and their parents about body focused repetitive behaviors (BFRBs), including Trich. Through the website, folks seeking help can find therapists in their neighborhood, and even hairdressers who are educated about Trich and its effects.
Struggling with Trich — or any mental health issue — doesn't make you a bad person; help is possible, and you are lovable.