The Sad, Secretive Hair-Pulling Disorder

ByABC News

April 25, 2003 -- Stephanie Recob began doing it when she was 11 years old. By 13, she was bald and wearing a wig to hide her painful secret.

"My head is ugly. Think of an 80-year-old man with no hair — that's what I look like," said Recob.

At 19, Recob is smart and athletic, but the college junior just can't stop pulling out her hair. She suffers from trichotillomania, "trich" for short.

Recob has never shown her head to anyone outside her family and says she never will. As odd as Recob's case may sound, it is not rare. An estimated 4 million women and 2 million men across the country are doing this to themselves.

Recob says she can go only two or three days without pulling her hair. "I don't understand it. I don't understand why I pull my hair out. It's not my fault. I don't do it on purpose. If I could stop I would," she said.

A ‘Body Focus Disorder’

Doctors aren't sure what causes trichotillomania. It usually starts in early adolescence. Researchers speculate that it's caused by a grooming gene gone berserk.

Despite what it looks like, it's not self-mutilation, it's not triggered by trauma, and because there are no obsessive thought patterns involved, it is not considered an obsessive-compulsive disorder. Instead, trich is a "body focus disorder," similar to severe nail biting or extreme skin picking. The condition is chronic and there is no cure.

Recob has tried everything she can think of to quit — from wearing stocking caps to bed at night or mittens on her hands to drug therapy. "I was on Anafranil, BuSpar, Luvox, Neurontin, Ambien, Zoloft, Prozac," she said. Sadly, none of it worked.

Doctors believe, for some people, a combination of antidepressants and behavior modification can help. But for some patients, like Recob, these therapies simply do not work.

Pleasure, Pain and Shame

The relentless, uncontrollable urge to pull has a profound effect on people's lives.

"The emotional impact is very deep. People feel very ashamed of their pulling," says Jennifer Raikes, who suffers from a relatively mild form of trich and has made a documentary film, Bad Hair Life, about the disorder.

Filming a support group she helped form, Raikes captured a startling glimpse into the hidden world of trich.

"I can't explain it to you, I can only show it to you," said one woman in the group, weeping as she removed her wig.

"At various times," Raikes said, "I pulled all my eyelashes out and most of my eyebrows. It started as a game, actually. I was pulling my eyelids away from my eyeball. It made a sucking noise. I was just playing and [an eyelash] came out. And I guess I was intrigued by that. It felt good."

A Maddening Compulsion

"Some people get a distinctly pleasurable sensation at the moment they pull. It's kind of a pleasurable pain," said psychologist Fred Penzel, author of The Hair Pulling Problem: A Complete Guide to Trichotillomania.

Penzel has worked with hundreds of sufferers and says whatever pleasure is derived, is immediately replaced by regret and shame.

"I've heard people refer to themselves as freaks," said Penzel. "'I'm disgusting. Who would ever want me? Who would ever have anything to do with anybody who's as crazy as I am?' "

Trich sufferers are not crazy, Penzel said. But for some people, the inability to stop nearly drives them mad.

Mandi Line said her compulsion drove her to thoughts of suicide. "There are definitely points where you want to die," Line said. "I didn't hate my life, but I thought, 'Well, God, if I'm not alive, then I don't pull my hair.' "

Line was a child model, homecoming queen and beauty pageant contestant. But her modeling days were cut short due to trich. "I was supposed to go to Miss Teen California and then I was set back by my hair," she said, adding, "Who's going to come out in the swimsuit category with a headband on?"

Line, who is now a wardrobe stylist in Hollywood, is a stunning young woman, but she says her compulsion has gotten worse. The night before her interview with 20/20's JuJu Chang, Line said she spent several hours in her room pulling out her hair.

She described her ritual to Chang: "There are certain spots that I pull from, and I go there, and I get it, and you can like hear … the popping of it pulling out. … I do it so fast now though. I pull it out, bite it. Pull it out, bite it. I don't swallow anything, but I bite the root, and make this popping noise. I have no idea why."

Sufferer Confronts Her Fear

Line says she has told some friends and co-workers about her disorder, but she's never been able to bring herself to expose her uncovered head. She decided to show 20/20 because, she said, she wants to confront her fear of ridicule and stop hiding.

"I'm just so sick of nobody knowing what this is," she said.

Despite her desire to show the world the physical effects of her hair pulling, intense feelings of shame nearly overpowered her resolve to show us. She cried, but she didn't back down.

Line has sworn off all drugs and therapy to deal with her compulsion. She says she's finally learned to accept herself, hair or no hair.

She says the most rewarding part of her journey has been the chance to be a role model at a summer camp for girls suffering from trich.

Line tries to comfort and encourage girls struggling with this compulsion. She said she wants young girls with trich to know it's still OK to be confident: "You don't have to be quiet and not talk to people because you think that you're ugly. You can still be cool and have no hair."