Trichotillomania a True Medical Mystery

Sufferers of trichotillomania pull out their own hair, strand by strand.


March 27, 2008— -- Would you be brave enough to enter a beauty pageant if you had a debilitating secret? If the top of your head — the first thing many people notice — looked frightening to some people?

Twenty-year-old Jena Metts wants to be Miss Kentucky. But she has a secret — she's almost bald.

The most distressing part? She pulls out her hair herself. And though she would dearly love to, she can't stop. She lives with it every minute of the day — pulling out her own hair, strand by strand.

"My last bad pulling spell was probably last week," she said. "I have to really make sure my little short hairs on the top don't stick up."

"I, like, literally have arguments with myself in my head," she said. "I'm like, stop pulling, stop pulling."

It's called trichotillomania, or "trich" for short. Although trich is treated as a psychiatric illness, the latest evidence suggests that it's not a "bad habit" like biting your nails or cracking your knuckles, or even an obsessive compulsive disorder.

Trich may have more in common with Tourette's syndrome, a neurological disorder characterized by repetitive, involuntary movements or vocalizations called "tics."

"Trichotillomania is such a medical mystery because we still know very little about the genetics and biology of it," says Dr. Nancy Keuthen, who heads a trichotillomania clinic in Boston.

According to the Trichotillomania Learning Center (TLC), up to 11 million people in the U.S. suffer from the uncontrollable urge to pull out their own hair, eyebrows, even their eyelashes.

"They may spend hours in front of a mirror in these very odd postures trying to locate that one hair that they know is there that they feel doesn't belong," Keuthen said.

No one understands how to cure trich. The standard treatments, such as drug and behavioral therapy, seem to do little for people like Metts. Over the past 10 years she's seen dozens of psychologists and psychiatrists, and taken a variety of anti-depressants. She says some of them worked in the short term, but none proved a permanent solution.

"I would kind of grow, my system would get used to having it, and I'd start pulling again," she said.

Metts has also tried a number of behavior modification tricks over the years.

"I tape my fingers," she said. "And then I wear gloves at night." She showed ABC News a beanie she wears "just to avoid temptation."

She's never gone more than three months without pulling.

"Whenever I get emotional, or sometimes very stressed, or if I'm upset, I go for my hair," she said. "And [it's] perfectionism sometimes. If there's like a little hair sticking out, I want to pull it."

"People say they experience pleasure or relief when they do it," Keuthen explained. "And then they often experience a lot of guilt for having pulled out their hair. And the guilt then drives them to pull more."

Trich can be a lifelong and devastating battle. Rosalina Castillo, 23, belongs to a support group in Los Angeles called Heart. She's been pulling her eyelashes and hair since she was 7. She wore wigs to hide her bald spots, but she says she went through high school always afraid of being discovered.

"I'd have comments like, 'Are you wearing a wig?' 'I think she's wearing a wig.' 'We should find out if she … maybe we should pull her wig off and see,'" Castillo recalled.

She avoided swimming, slumber parties and sports, and she still refuses to go out on a date.

"I don't date at all just because I'm scared of the rejection factor, of, 'No, I don't want to date you because you pull your hair,'" she said. "I'd rather stay in my box, you know, 'cause the known is safer than the unknown."

The support group helps its members cope, giving them activities like sign language and jewelry-making -- things to do with their hands -- as alternatives to hair-pulling. It can be a safe setting to take a first step toward self-acceptance.

Trich can send its sufferers into a tailspin of isolation and depression. Though it affects approximately 1.5 percent of males and 3.5 percent of females in the United States, according to TLC, some doctors have never encountered it.

"One time we went to the doctor, and he said, 'well, just stop,'" said Jena Metts' mom Cathy Metts. "'You don't have to do that. You just stop.'"

ABC News met Mandi Line three years ago, and it was the first time she admitted publicly that she had trich. Line was always pretty and popular: a child model, homecoming queen, beauty pageant winner and successful Hollywood stylist, all the while pulling out her own eyebrows and hair.

During our initial interview, she said, "It's gotten worse. Actually before I came here last night, I went in my room and I just sat there for four hours."

At 29, she'd only shown her bare head to her mother and an ex-boyfriend. Then, during our interview, she made a difficult decision: to reveal the devastating effects of trich to millions of TV viewers. It was much easier said than done, and was an emotional moment.

Line said she cried "because you're sitting here interviewing this girl, and you think like, she's one person, and then all of a sudden I'm going to be someone else in about a minute … what I think is the ugly version of me."

Line said that taking of her wig was "like I'm naked." But now, years later, Line says that she's "a different person."

"That girl back then, she cried," Line recalled. "It was heartbreaking, and when I see it I watch myself cry because she's so scared of what people will think after that interview."

After her appearance on "20/20" Line became a role model for people with trich.

"Women will come up to me and grab my hand, and they're like, 'my little boy hated himself and he wanted to kill himself, and now he thinks he's OK. He thinks he's cool.'"

Jena Metts has reached out to Line as well, and with her example and encouragement Metts braved the Miss Kentucky Pageant.

"She was just like, 'Oh my gosh, you should totally do it,'" Metts recalled. "'You can do it and it would be awesome.' And her and Rosalina really, really helped me as far as like pep talking me in."

"Jena's gonna be 10 times the lady I am," Line said. "Jena is skyrocketing already."

"At first it was hard to tell the other girls about how I pull out my hair, but once I said it, and it was kind of out there, it was kinda like water under the bridge," Metts said.

"That's one of the reasons why I'm doing it," she said. "It's such a disfiguring disorder. A lot of people who have it are ashamed of it. They feel they can't live a normal life."

Even though the pageant rules would have allowed her to wear a wig, Metts decided not to. And no, she didn't win. Except by being there.

"To be honest, the whole experience has been really uplifting," she said. "If I had a chance, I'd do it again."

As for Line's hair-pulling, she says she now has bad weeks and good weeks. At one point she'd improved so much she considered giving modeling another try. But she doesn't think she'll ever be truly cured.

"I don't want people to give up hope because there are … there's some people that have stopped, you know. But I don't think I'm gonna stop," she said. "I'm 31 years old. I just think that I need to be a better me. But cure? I don't know."

For more information on trichotillomania visit Producer Katie Escherich contributed to this report.

ABC News Live

ABC News Live

24/7 coverage of breaking news and live events