For people who literally pull their hair out, there's help
Noelani Jai, 44, had a secret she kept from everyone, including her husband. From the age of 13, whenever she felt bored or stressed, Jai pulled hairs from her scalp. One by one. For a hours at a time. With hairspray and clever styling, she carefully kept her partial bald spot hidden from view.
While the hair pulling relaxed Jai and didn’t hurt, she constantly felt emotional pain and shame. “I thought it was my own personal weakness,” she says. “I thought I was weird. I thought I was a freak.”
She’s not. Jai suffered from a rare disorder known as trichotillomania. Trichsters, as some people with the condition refer to themselves, pull hair--from their scalps, eyebrows, eyelids, pubic region, legs, chest or arms. Some yank out one hair at a time, other entire clumps. They might also pick their skin or bite their nails. Some ingest the hair, which in rare cases has caused fatal intestinal obstructions. The disorder generally affects more women than men and mostly beings at puberty.
A hybrid of obsessive-compulsive and impulse disorders, trichotillomania affects about 1 to 3 percent of the general population, according to the Trichotillomania Clinic and Research Unit at Massachusetts General Hospital. It’s difficult to assess exactly how prevalent the illness is, because like Jai, many sufferers go to great lengths to hide it.
That’s been changing. More people are coming out of the trich closet and getting help, and Christina Pearson, who founded the Trichotillomania Learning Center (TLC) in 1991, believes progress has been made in gaining public awareness and acceptance. TLC’s annual conference, which welcomes people who suffer the disorder as well as those who treat it, runs this year from May 1 to 3 in Boston. Dozens of specialists and advocates will conduct over 60 lectures and workshops.
“When I started TLC, the average call was from someone who had suffered for 20 years,” says Pearson. “Today, the average call is from a parent whose child has recently started pulling. We’re intervening in people’s lives much earlier, so that they know that they are not alone, that they are not crazy. It’s a real disorder.”
Although trichotillomania is not well known, doctors have been dealing with it for thousands of years. In the earliest recorded medical account, according to the book “Trichotillomania,” Hippocrates recommended checking if patients pluck their hairs when they came in for regular visits. Homer and Shakespeare wrote about hair pulling, and in 1889, Francois Hallopeau, a French physician, made reference to a case of a man who had removed all of his body hair, calling it trichotillomania for the first time. And of course the expression “I could pull my hair out!” is a common idiom.
The current interest in trichotillomania began when the scientific community started to pay attention to obsessive-compulsive disorder (OCD) about 30 years ago, says Dr. Nancy Keuthen, co-director of the Trichotillomania Center and Research Unit. Trichotillomania is classified as an impulse control disorder in the Diagnostic and Statistical Manual of Mental Disorders, but Dr. Keuthen and many others believe it shares features with OCD. Recently, it has also been classified as one of many “body-focused repetitive behaviors” like skin picking.
“The biggest danger is not the loss of hair,” Pearson says, “it’s the loss of self esteem, because your hair will grow back most of the time, but you feel like a monster.”
No cause of trichotillomania has been discovered. Scientists are still studying the disorder’s genetic and neurological underpinnings, says Keuthen, who thinks it might result from a genetic predisposition combined with environmental triggers.
While no cure has been developed, cognitive behavioral therapy has helped some sufferers. Other have reported progress with hypnosis and alternative therapies. Medication might be beneficial in certain cases.
“We do have effective treatment; it’s not perfect but it works,” says TLC’s Pearson, 62, who was a hair puller for years. She was able to break free from the disorder, but it took repeated practice and reprogramming of ingrained habits.
Many trich sufferers consider Pearson a hero. “For most of us, she was our first phone call regarding trichotillomania,” says Jai, who has also stopped pulling. She now runs a trich support group in California for children, teenagers and their parents.
One member is Kylee Loughran, 15. She started pulling out her eyelashes at age 9 when she was being bullied a lot at school. Within months, she had none left. At 12, her pulling escalated. She began tugging at her eyebrows, until they, too, disappeared.
When Karen Sugerman, Kylee’s mother, looked for help, she had a hard time finding a specialist. “Not many psychologists are trained in it,” she says. “I found myself educating the psychologist.” In addition, not all health insurance companies cover treatment of trichotillomania, Sugerman says.
Kylee has tried different possible solutions, including mind-control techniques and sleeping with gloves, but she hasn’t yet found a way to stop plucking. She has, however, learned to be more comfortable with herself and more open with her friends. She even discovered that a classmate is also a hair puller.
“I felt I was the only one,” she says. “It was really nice to meet someone else who had the same condition.”