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Published November 10, 2013, 05:21 PM

Living with the urge: Compulsive hair-pulling disorder affects one in 50

FARGO - When Sandra Bodek was a little girl, she plucked the eyelashes from her dolls. By the time she was 9, she was plucking her own. Her hair-pulling moved to her scalp around age 10.

By: Meredith Holt, INFORUM

FARGO - When Sandra Bodek was a little girl, she plucked the eyelashes from her dolls.

By the time she was 9, she was plucking her own. Her hair-pulling moved to her scalp around age 10.

Bodek, 36, of Fargo, suffers from trichotillomania, a compulsive disorder that causes people to pull hair from different parts of their bodies.

It was a while before anyone noticed because she hid it well under her ponytail, but it affected her social interactions.

An invite to a pool party was enough to make her physically ill.

“I didn’t know how to tell them that I couldn’t go,” she says.

The problem got worse before it got better.

Bodek started cutting her own hair at 12 because she was afraid to go to a hairstylist. She was so depressed by 14 she attempted suicide.

“I just felt like a freak,” she says.

Millions of Americans (2 to 4 percent) have trichotillomania, but it wasn’t until the late ’80s that any information about it appeared in mainstream media.

When Sandy Rosenblatt’s parents became clued in to her hair-pulling, they had no idea what was wrong.

The 39-year-old trichotillomania blogger from the D.C. area says it wasn’t even in the diagnostic manual yet.

Things changed for Bodek when her mom brought home a magazine featuring a story by Christina Pearson, the founder of the Trichotillomania Learning Center.

“That was when I was like, ‘OK, I’m not by myself, this is common, other people have it,’ ” she says.

Renae Reinardy, a psychologist with a private practice in Fargo, says awareness about the problem is increasing but ignorance lingers.

“With all the media coverage, everybody has heard about hoarding, but unfortunately there just hasn’t been a big TV show on trichotillomania,” says Reinardy, who specializes in obsessive-compulsive disorder and trichotillomania.

The documentary “Trichster,” slated for a spring 2014 festival release, carries the tagline, “The most common disorder you’ve never heard of.”

The eight people with trichotillomania featured in the film include a woman who photographed Rosenblatt.

“Count your Facebook friends,” she says. “Odds are three to five of them have it.”

Self-soothing

It wasn’t emotional distress or anxiety that first caused Bodek to pull her hair.

Like for many others, it’s a self-soothing mechanism. She has a tendency to do it when she’s bored or right before falling sleep.

She first saw her 9-year-old son do it in bed. Then one day he came to her after school, crying. “Mom, I have it, too.”

Because Bodek is open about her struggle, her son felt comfortable telling her about his.

“He’s so lucky because his mom has it. When I was his age, I didn’t know anybody who had it,” she says.

Although there’s no known cause, the disorder is neurobiological in nature and has a genetic component.

Trichotillomania often starts in adolescence, like it did for Bodek, Rosenblatt and Bodek’s son, Reinardy says.

“Hormones play a role,” she says. “That’s why we tend to see the onset right around that pre-puberty age.”

It can also be “unlocked” by stress and high-sugar, high-carbohydrate diets.

Rosenblatt’s started when her parents were going through a divorce and later worsened when she went to college.

“The week before college, I had all of my eyelashes, and by the time I left, I had no upper eyelashes. I just pulled them all out,” she says.

She’s dismayed to read posts from others beating themselves up for giving in to the urge. She’s matter-of-fact about it when she does it.

“I’m like, ‘Well, I pulled out my hair, and I’m going to start over and get back on the horse if I can,’ ” she says.

Pulling does not make you a bad person, she says, and it can affect anyone.

Reinardy, who devotes about half of her practice to the disorder, says trichotillomania is indiscriminate. It affects people of all races, cultures and socioeconomic classes.

“If we’re human and we have hair, it’s going to affect one out of 50 people,” she says.

A vicious cycle

Reinardy says there are two types of pulling, focused and unfocused.

Focused pulling is when they do it intentionally, i.e., “I had a rough day at work, so when I get home, I’m going to the bathroom and pulling out my hair.” Unfocused pulling is when they absent-mindedly pull while sitting in class or watching TV.

“That’s when other people are more likely to see it, because once people with trichotillomania realize they’re pulling, they try to stop,” she says.

Bald spots, scarring, or hair that’s grown back a different color or texture might also call attention to the issue.

“When people are pulling, it feels good, it feels like the right thing to do. It’s the consequences afterward that then make them feel worse, which then becomes a vicious cycle,” she says.

Reinardy says kids tease kids with trichotillomania, calling them “lizard eyes” or pulling their wigs off, which can worsen it.

“Unfortunately, emotional stress is oftentimes a trigger for compulsive pulling,” she says.

When Rosenblatt was a child, she was bullied and beat up for her condition.

She went from having long, straight brown hair to baseball-sized bald spots with no eyebrows or eyelashes.

“They (her classmates) noticed pretty quickly, and the teasing began,” she says. “I was beat up on the bus, I was beat up in my backyard, some of my friends were no longer my friends anymore.”

Reinardy warns parents against threatening punishment for pulling.

“When parents try to threaten or punish their kids or tell them, ‘Oh, you’d be so pretty if you had your eyelashes,’ that just tends to stir up more negative emotion,” she says.

Reinardy often sees self-esteem issues, depression and addiction in patients.

They’ll try to “quiet down” the desire to pull with drugs or alcohol.

“It’s kind of like being covered in poison ivy,” she says. “Even though you know it’s not the right thing to do, you have these strong physiological urges.”

Breaking the silence

Part of the problem is the secrecy, shame and guilt that often surround it.

Reinardy says a lot of people keep their condition secret because they’re too embarrassed to get treatment.

“They think that they’re the only ones. Now that’s changing a little bit with the Internet,” she says.

Bodek started her first support group in 2006 and has since started two more online.

“Through TLC (the Trichotillomania Learning Center) and Dr. Reinardy, I got the courage to start my support group,” she says.

Bodek, in turn, has paid it forward, giving about 50 of her members the courage to start their own groups.

Rosenblatt, who’s written essays for The Huffington Post and was featured in U.S. News & World Report, intended to keep her trichotillomania a secret.

“Unless somebody noticed, I wasn’t going to tell anybody,” she says.

But she gave in when a friend suggested she might be able to help others by breaking her silence.

Since then, she’s participated in a panel at TLC’s conference in April and started working on a book with others.

“It was an accident that turned into a purpose,” she says.

With the help of their networks, Rosenblatt and Bodek have learned how to cope with their trichotillomania.

Bodek says people with trichotillomania have been told, even by doctors, to “just stop doing it.”

“But it’s not that easy,” she says.

Reinardy says trichotillomania can’t be treated with regular therapy.

“Treating trichotillomania is a lot like building a house – you can’t do it with just a hammer,” she says.

She teaches patients to distract themselves, use sensory substitutes, or block themselves from pulling using things like hats, Band-Aids or rubber fingertips.

“There are lots of strategies we can use to make the behavior more difficult,” she says.

Bodek noticed that the more open she is about it, the less she pulls.

“We all have things (to deal with). To me, that’s the least of my worries. I think when you get to that point is actually when the hair-pulling gets better,” she says.

Rosenblatt feels the same way. The more she accepts herself – trichotillomania and all – the better she feels.

“Everybody has a secret,” she says. “It just so happens that I talk about mine.”

Readers can reach Forum reporter Meredith Holt at (701) 241-5590

Signs and symptoms

Warning signs include:

• Wearing hats, kerchiefs or wigs

• Wearing lots of eye makeup and/or glasses

• Excessive fiddling with one’s hair

• Preoccupation, anxiety, depression, career or academic decline

• Avoidance of windy and wet situations, including swimming

• Changes in social behavior patterns

Symptoms include:

• Recurrent pulling out of one’s hair, resulting in hair loss

• Repeated attempts to decrease or stop hair-pulling

• The hair-pulling causes clinically significant distress or impairment in social, occupational or other important areas of functioning.

• The hair-pulling or hair loss is not attributable to another medical condition (e.g., a dermatological condition).

• The hair-pulling is not better explained by the symptoms of another mental disorder (e.g., attempts to improve a perceived defect or flaw in appearance in body dysmorphic disorder).

Source: Trichotillomania Learning Center

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