Trich.org

What It's Like When You Can't Stop Pulling Out Your Hair

It's a disorder called "trichotillomania." Teenage girls are the most likely to become sufferers. And everything about it is a living hell.

The itch tells you to yank the hair out. From your scalp, or your eyebrows, or your arms, or anywhere else -- each and every follicle. You often have zero awareness when you're doing it. And you may always be doing it.

Such a compulsion is hard for most of us to imagine, but it's a day-to-day, minute-to-minute struggle for 4% of the population -- one out of every 25 Facebook friends you have -- and while relatively obscure, it's one of the most common mental health disorders that teenagers face. Also, one of the most misunderstood.

Many sufferers are able to cover it up, but with the internet allowing them to find each other and form communities, not all feel the need to hide any longer. Here are some of their stories.

If you have trich, you'll look down and see this. Probably every day.

Nicole Santamorena, 19, sophomore, Fashion Institute of Technology: “Every time I got up in class, I noticed I had hair all over my desk. My mom asked why I had bald spots. I didn’t even know that I was pulling -- I just thought, ‘OK, I’m shedding.’”

Mackensie Freeman, 15, Atlanta, Georgia: "I’ll put my hand down, but two minutes later I’ll be pulling again without even remembering when my hand went up to pull -- it’s an automatic gesture."

It normally develops at puberty. Nearly 90% of sufferers are girls.

Dr. Suzanne Mouton-Odum, StopPulling.com: “My personal belief, after seeing hundreds with the disorder, is it has a lot to do with female hormones. There’s certainly a genetic component -- people with [afflicted] family members have it more."

Dr. Marla Deibler, executive director, Center for Emotional Health of Greater Philadelphia: "It wasn’t noted as a psychiatric problem and researched...mostly since the late ‘90s, so it’s still very new in terms of us trying to get a really good understanding.”

It's why actress Olivia Munn pulls out all of her natural lashes.

Getty Images

"I rip my eyelashes," she told the New York Daily News in 2012. "Every time I run out of the house, I have to stop and pick up a whole set of fake eyelashes."

It's most commonly a response to anxiety. And what teen isn't stressed about a million things at once?

Nicole: “A lot of times I’m really anxious about my midterm or a huge semester project that I have to do. The hands will go to my hair. Stress and anxiety, that’s definitely the trigger for me.”

Dr. Mouton-Odum: "The thing [most] people can relate to is nail-biting -- they’ll bite when they’re stressed. Or, 'I’m eating chips at a Mexican restaurant and I have no idea how many I ate.' ... It is absolutely not self-mutilation, which is something someone does to be ugly or hurt themselves [like cutting] -- people misinterpret that. They’re two totally different things."

Teens with trich are overwhelmingly bullied at school.

Katherine Paris, 19, sophomore, Sacred Heart University: “They’d call me ‘freak’ or ‘baldy.’ People I thought were my friends didn’t want to be seen with me anymore. I actually switched schools for high school because I didn’t want to be around them."

Nicole: “Boys would call me ‘cancer girl.’ I’d go to the bathroom and girls would be talking about me. ... They were like, ‘Ewwwww.’ And I was like, ‘Oh, I’m sorry...’”

Mackensie: “My history teacher saw me pulling one day and said, ‘Do you want me to tell your adviser?’ in front of the whole class. Oh my God, I was mortified."

It's hard enough making friends without your hair. It's even harder dating.

Katherine: “I dated one person for a while. They pulled off my wig and had a horrible response: ‘Now I can see why you wear a wig.’ That was the extent of my dating in high school. That just solidified my fear of people finding out.”

Nicole: “I’ve only ever had one boyfriend. ... His mom would say stuff about my hair to my face: ‘Your hair looks shorter,’ or even, ‘Did you get your hair thinned out?’ She told me, ‘I don’t think you’re right for my son. He needs to date somebody else, not you.’ It hurt my feelings a lot.”

The hurt isn't only emotional. Antibiotics may be required for skin infections.

Katherine: “I was pulling fistfuls, so I would get something like a scab on my head. I would keep digging and digging to the point where I couldn’t even lay my head on a pillow at night because my head was so raw. I would dig into my head in the spots where I pulled.”

Dr. Deibler: “That creates lesions, and their skin gets sore, red and inflamed. ... They can have carpal tunnel or sore wrists or fingers from the repetitive motions of pulling. People can get eye infections -- blepharitis, or inflammation under the eyeball -- if they pull their eyelashes."

At estimated 13% of trich sufferers will compulsively eat their own hair, which can cause a life-threatening buildup in the digestive tract.

Last month, an 18-year-old in Kyrgyzstan underwent surgery after ingesting nine pounds of her own hair, making headlines around the world. Our initial writeup was admittedly not our most sensitive moment -- let's just say we included a GIF of a cat hacking up a hairball -- which got us talking with trich patients and listening to what they've gone through.

Katherine: “I ate my hair. It wasn't always the entire hair, but it was always the follicle at least. ... There was a point when I was having a lot of stomach pains, so they thought I had a hairball in my stomach. They put a camera down my throat -- I was unconscious for that.

“The eating started unconsciously, but eventually that became conscious. I had no idea why I was doing it, but I became strangely fascinated with the hair follicle. I would play with it, and then put it in my mouth, and it became ingestion. I thought I was the only one who did it.

"Eating the hair felt very strangely textured. The follicle itself was chewy and squishy, as gross as that sounds. It kind of felt like when you bite into a piece of gum or a gummy bear. The hair itself wasn't so pleasant and would get caught in my throat or on my tongue a lot."

A charity provides free hairpieces -- which would otherwise cost hundreds of dollars -- to young people, but that's not always a solution.

Mackensie: “I found out about the Hair Club for Kids. ... I felt so happy there -- I knew they wouldn’t judge me if I was bald in front of them. I wasn’t ashamed.

"I got the hairpiece and braided it the night I got it. Everyone at school looked and stared at me, and I was just smiling because I was so happy. All the teachers said it looked great. I didn’t pull for two weeks.

"But then I started to pull at it -- I was just so desperate to pull, to have something to do with my hands...then I pulled out all of my eyebrows. I was so horrified. I called my parents crying and wanted them to come from my sister’s soccer game and be with me. I felt like all the progress I had made just came crashing down. I felt so defeated, because I’d been doing so well.”

The pressure trich puts on families is enormous. You thought your parents just don't understand?

Katherine: “My mom thought she could fix it, could find a way to make me better. I felt she was embarrassed by me, and I hadn’t lived up to their expectations. She would find piles of hair and say, ‘This makes me want to throw up -- it’s disgusting.' There was so much tension and fighting. My dad would get mad at her for making me feel bad. My whole family was in turmoil."

Mackensie: “My dad suggested we just cut off all my hair -- he took scissors out of the bathroom and cut it off and shaved part of it, so it was really, really short. My sister looked at me like I was crazy."

Nicole: “I used to take art lessons, yoga, and dance, but I had to quit a lot of those things so that my parents could afford my therapy sessions. Even now, I have had to choose between spending money on physical health or mental health. It is a constant struggle and financial burden.”

Dr. Mouton-Odum: “All too often parents get freaked out and think it’s a sign of something terrible: 'They’ve been abused or molested.' And that is wrong. It doesn’t mean anything -- it’s like saying, ‘If you bite your nails, you were sexually abused.’ That’s not how it works. Most people with trich have really loving families they grew up in."

Medication can help in some cases. Behavior therapy helps in many others.

Dr. Deibler: "There hasn’t been any medication that’s FDA-approved for trich. That being said, if someone has a problem with anxiety or depression, and that’s their big trigger, then an [antidepressant] might actually be helpful."

Mackensie: "The only way is to keep myself constantly busy, constantly play with a fidget toy, but that’s hard in class when you have to take notes. I probably have 50 things from Silly Putty to balls to hair samples, horse hair -- everything, you name it.

"You can only be distracted with one thing for so long. I don’t always remember to use them. I forget or don’t want to use them because [trich] brainwashes you into thinking you don’t want to help yourself, and you like pulling even when you don’t."

For a lucky few, the compulsion disappears.

Katherine Paris

Katherine: “In group therapy, we would sit on our hands...and of course you would get an itch, but you had to choose not to scratch it and wait for the wave of that itch to go away.

"At first it felt like torture...but I learned how to control my body more. I’m actually pull-free now and have been for two years.”

More than anything besides a cure, trich sufferers just want people to understand -- or try, anyway -- instead of judge.

Katherine: “They hear about it and assume it’s disgusting or weird, but it affects more people than eating disorders, which aren't considered strange in our society...it’s not weird; it’s just something we have to deal with.”

Mackensie: “It’s so hard to control. If all it took was wanting to stop, we would. I would’ve stopped the first day, but it’s hard work to even get up in the morning -- to do eyebrow makeup or my hairpiece.

"I've definitely had nightmares where I pull. I would ask for cotton gloves before I went to bed -- or all the time -- to help me stop pulling. We don't do it for attention."

Nicole: “I lied when people asked why I wore a bandana or a hat to a sleepover. I’d lie and say, 'I got gum stuck in my hair.' I felt really guilty, like I was keeping this huge dark secret. ... I started telling people because I was like, 'What’s the big deal?' Everybody has something that they do.

"I guess middle school age is the worst -- everyone’s just moody and terrible to each other -- but the older I get, I realize people have been learning to be more accepting.

"Society calls for it -- yeah, there’s all these campaigns -- but I think people have learned it doesn’t pay to be cruel. What does it pay? It’s easier to do that, but it’s braver and kinder and better to share and accept.”

Learn more at Trich.org, and check out mtvU’s Half Of Us for resources and links to help on mental and emotional health issues.