The Symptoms

Mackensie Freeman was in fifth grade when she stared at herself in the mirror and saw something she didn't like: Her eyebrows. They looked too bushy. She yanked out a few of the errant hairs with her fingers.

But then she couldn't stop.

"I was so obsessed with the feeling that the lesser the hair, the better," recalls Mackensie, now 16, "so I just kept pulling and pulling."

A few weeks later, her parents noticed the sparseness of her brows. They asked her what was going on. Embarrassed, she admitted that she'd felt strangely compelled to pluck them, even past the point of cosmetic improvement.

Her concerned dad did a quick Google search and turned up a condition none of them had heard of: trichotillomania.

Occurring in about 2 to 4 percent of the population, it seems to be in the same family of disorders as obsessive-compulsiveness and repetitive tic disorders. Trich, as it's informally known, drives people to pull out their own hair from their face, scalp, chest, legs, or other parts of the body, resulting in noticeable bald patches. Most sufferers are women, and their cases range in severity. The urge to pull is mild for some, but for others like Mackensie, it can feel so intense that it impairs concentration, disrupts normal functioning, and triggers a vicious cycle of pleasure and shame.

"We don't know why it occurs," says Jennifer Raikes, 43, executive director of the Trichotillomania Learning Center, the main non-profit advocacy organization that provides support to those with the disorder. "The one thing we do know is it's at least partly genetic."

The most helpful approach to treatment is cognitive behavioral therapy, particularly with a therapist who's trained to help patients manage the condition.

The Diagnosis

After reading all about it on the Internet, Mackensie's parents knew they needed to get their daughter some help, so they took her to a therapist who confirmed the diagnosis.

"It was all really new to me and I didn't like talking about it," Mackensie says. "Back then, it was just my eyebrows. That was before it got really bad."

Though she discussed her compulsions openly in therapy, she was unable to overcome them. In fact, they only got worse.

When she reached sixth grade, she started pulling out her head hair. It no longer became about looking good — now it was about satiating her desire to pull. A few times, she attended a support group for fellow trich sufferers but the experience was demoralizing.

Mackensie in sixth grade. Courtesy

"All the other girls pulled out their head hair and I was always really grateful before that I didn't do that, but I couldn't prevent it eventually," she admits.

Anytime her hands had nothing to do, like in class or in the car, they found their way to her scalp. The urge became so overpowering that she stopped caring if people saw her pull in public. By the end of sixth grade, she had a huge bald spot, so her dad shaved her head.

"People would stare when I went to grocery store," she remembers. "It's not something you see every day, a sixth grade girl with patchy hair and bald spots."

She got called a boy a few times and stopped taking pictures.

Once she returned to school with a shaved head, her middle school guidance counselor asked her for permission to tell the grade about her condition. Mackensie relented, hoping it would quell the chatter. But it didn't stop a hostile seventh grade boy from approaching her and asking her if she'd shaved her head on a dare. Word even got back to her that the school principal thought she ought to be institutionalized.

Mackensie felt guilty, vulnerable, and helpless — still, she couldn't stop pulling at the prickly little hairs on her scalp.

Then her dad found out about a hair club that provided wigs to kids with hair loss. Thinking it would help her stop pulling, she got measured for a hairpiece that was similar to her own brown curly hair, but longer.

"I was so excited when I got it," she says. "I finally had what the other girls had — hair. I was so confident. I didn't pull for two weeks after I got it."

But soon the dreaded urge returned. She pulled the hairs out of the wig, though she continued to wear it throughout sixth and seventh grade.

That was when her eyebrow plucking intensified, and she hit a new low.

"I was home one day, my parents were out with my sister, and I pulled out every single individual hair," she recalls. "I called them crying and they had to come home. I was so ashamed of myself. The next day I had to go to school like that."

Over the years, she's tried a variety of treatments, including medication for ADHD and antidepressants. She wears gloves when she needs to take exams and tries to distract herself with fiddle toys like squishy balls to keep her hands away from her body.

Yet such distractions don't truly resolve her fundamental issue.

"One thing I'm working on in therapy is my want to have trich," she says. "I like pulling hair and it's a big barrier to overcome the pleasure of doing it. It's calming."

The Latest

One positive to come out of her struggle is the community she's discovered at the Trichotillomania Learning Center. Mackensie has attended their annual conference for the past five years and will be giving a speech at the upcoming one in April.

She's met her best friends there and keeps in touch with them regularly.

"It's really nice to know I'm not alone," she says. "I can talk to them about it."

She managed to grow her hair back in eighth and ninth grade, but continues to pull at a bald spot on the back of her scalp. Now halfway through 10th grade, she sometimes wears a clip of fake hair supplied by the hair club to cover it up.

She's also trying a new technique to log her urge when it arises, wait for three minutes, and see if it goes away. But it's tough to resist.

"In the moment, I act on it, it feels good, but then I regret later," she says. "You can spend three years working up to a head of hair and within minutes you can ruin everything."

Her eyebrows today are "a bit sparse" and she draws them in with eyebrow makeup to enhance their shape. Thankfully, she says, her family and teachers serve as a solid support system and the teens in her grade are accustomed to her habit. Sometimes they'll kindly remind her to stop, which makes her momentarily aware of her behavior.

Until she feels 100 percent ready to move past it, she knows it's going to be an ongoing daily interference. In the meantime, she finds catharsis in sharing her story.

"I've found a lot of strength in coming out and talking about it," she says. "People live in so much shame. I like being able to help let them know they're not alone."

Kira Peikoff is the author of No Time to Die, a thriller about a girl who mysteriously stops aging. It is available now. Connect with her on Facebook or tweet her @KiraPeikoff.

If you've endured a medical mystery and want to share your story, email Kira at cosmomysterydiagnosis@gmail.com.

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