Obsessive, Compulsive, Hair-Pulling

Trichotillomania, the "hair-pulling disease," can have serious effects

by: Betsy Vasquez

Noelle Lanley, 23, is a graphic artist who never leaves home without a fashionable scarf on her head.

Carmen Capagroso, 42, is an artist, after-school teacher and married mother of two who has a different bandana for every day.

Tabitha Rodriguez, 25, is a graduate student at New York University who loves long sleeves and hates long hair.

These women suffer from trichotillomania.

Dubbed “trich” by its victims, trichotillomania is the medical term for obsessive hair-pulling. Those afflicted pull hair from different parts of their bodies: the scalp, legs, eyelashes, eyebrows and pubic area. About one-third of trich sufferers bite their hair off by the root, while up to 18 percent ingest the whole hair. Skin-picking is also a form of trichotillomania.

“Twirlers” twirl their hair into little knots. This is usually considered a warning sign of trichotillomania. “I’ve been a twirler since I was a baby,” said Lanley, who like other trich sufferers in this article, asked that her name be changed. “I started pulling around 13. I knew it was a weird thing to do, but I didn’t pay much attention until I started seeing bald spots that year.”

Labeled in 1987, trichotillomania is still a fairly new disorder uncommon to most people, including some psychologists.

“In graduate school, I studied many compulsive disorders, but trichotillomania as I knew it was very rare,” said Elaine Abramovich, a licensed clinical social worker.  Abromovich, who owns a private practice in Forest Hills, has one patient with trichotillomania—more than most psychologists in the New York area.

“I have empathy for those who suffer from trichotillomania,” she said. “At the time I was studying, we really didn’t put as much emphasis on it because it really wasn’t that well known.”

But the times have changed, and awareness has begun to grow.

Jannifer Raikes, a filmmaker and advocate for victims of trichotillomania, is president of the Trichotillomania Learning Center, a Web site that serves as an informative center for sufferers of trichotillomania, as well as family and friends. Through her efforts, awareness has increased.

“An eyelash takes six weeks to grow back,” Raikes said on an online article. “I learned this when I was 9 years old. For months I had been pulling out my eyelashes and playing with them. I don’t know why I started; it just felt good. Each one was interesting: There was a root, and sometimes pigment on the tip.”

Raikes has produced films on the disorder, increasing the realization that trich is out there. “Today, one in 50 Americans is thought to suffer from trichotillomania,” Raikes said. “It isn’t yet known what causes hair-pulling, but research has uncovered structural differences in the brains of sufferers, specifically in the areas associated with motor actions.”

Research suggests that trichotillomania usually begins in adolescent children who have endured a traumatic experience in their lives, and as a result, have resorted to pulling out their hair for comfort. “I’m not sure that’s true,” Lanley said. “I think it’s just the way I’m wired. I know I started when kids at my summer camp had lice. I was so worried I had it and I thought if I actually removed certain suspect hairs I would be protecting myself.”

Capogroso does not think her trich is related to trauma either. “I actually had a very healthy and nurturing childhood,” she said. “I remember I started by pulling my eyelashes and making wishes when I blew them off my fingertip.”

The birth of trich, like many other facets dealing with the disorder, is still a mystery, but one thing is clear: trichotillomania is an emotionally scarring disorder. Many victims wear hats, not just to hide the bald spots, but to avoid the wind blowing their hair around. Capogroso has not been in a pool or gone to the beach in 15 years.

“It is socially and physically limiting because of the shame and low self-esteem induced by pulling and its outcome,” she said. “It’s hard when my kids ask me to come and dunk my head in the pool…I just can’t.”

Carmen is now worried about her son who is showing signs of trich. “My 11-year-old son has it too,” she said. “He pulled a spot out when he was 8, and now just seems to twirl his hair into a knot. I had to cut it off because it was a big knot. He had a bald spot in the front of his head for picture day.”

 Most people who suffer from the disorder hide it from friends and family. “It’s just embarrassing,” Rodriguez said. “In high school, I would have to make up stories. I wore a bandana all the time. I was known as the girl with the bandana and I didn’t and still don’t like people getting close to my head.” 

 Noelle did tell her sister, whom she was close to. “My sister was disturbed and thought it was freaky,” she said, stroking the hair creeping out of her scarf. “I regret telling her.”

Many trich victims are single. It is hard to engage in intimacy out of fear of rejection and the belief that others think they are disgusting. “No guys know,” said Rodriguez, blushing. “I would die if a guy knew.”

Though there is still no cure for trichotillomania, different methods have been invented by those who have trich. Koosh balls, band-aids, tape, silly putty and picking at dry glue have been the most effective methods of therapy. Objects like band-aids, toys and scarves help keep patients’ hands busy and arms away from the scalp or skin. “Having things in key places so that I reach for that instead of pulling is a method I have been putting into action. A good art project is trying to bobby-pin your hair in different ways to hide your bald spots,” Capogroso joked.

A Web site called stoppulling.com is designed to help trichotillomania patients. Houston psychologists Suzanne Mouton-Odum, Melinda Stanley and Nancy Keuthen, who specialize in the disorder, developed the site, but some patients need further assistance. “Those online things don’t work,” Rodriguez said. “Nothing works for me.”

Prozac is the most widely prescribed drug among those with trichotillomania, according to stoppulling.com. “I would recommend Prozac in extreme cases,” Abramovich said. “I don’t think that it is the best way to help the disorder.”

Will these women ever stop pulling? “My goal is to become prolific in managing it,” Capogroso said. “It’s a work in progress.”

Rodriguez looked at her hands. “I don’t know,” she said with reluctance. “Right now I am not confident it will ever go away, but I sure hope it does.”

Lanely, without a second thought, blurts out what everyone was thinking but was too afraid to say or to admit: “No.”

The most effective form of therapy for trich sufferers is talking to others with the disorder. “I have found the support group very helpful,” said Raikes, who runs a support group in Manhattan. “Not everyone’s pulling stops, but many, many people are able to pull less. And I think most everyone who comes to the support group at the very least feels a bit better about their situation—less alone, less mad at themselves.”