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There's No Cute Indie Film or Romance Novel About Trichotillomania

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It started when a friend asked my boyfriend, “Did Sarah shave part of her head?”

No, that’s not right.

It started when I went to my first appointment at my college’s psychiatric center and timidly selected “anxiety” on the form, thinking, “Yeah, I guess that’s close enough.”

Nope.

It started when my freshman year history professor asked me if I was OK. My hand shot down to my side and I sat there, stunned, unsure how I could be tugging at my eyebrows without even noticing.

That’s not it either.

It started when I looked in the mirror in my dorm’s bathroom, pushed my bangs to the side and gasped when I noticed what remained of my eyebrows. I was already trying to figure out how to get out of a swimming trip with friends I had planned for the following month.

No.

It would probably be easier if I could pinpoint exactly when it started. If I could think back and say, “Oh, yeah, that’s when I started pulling.” Unfortunately, it’s not like that. I know I didn’t always pull out my hair. I know it’s not normal, but I don’t know why it happens. It just does.

Trichotillomania is defined by the Mayo Clinic as “a disorder that involves recurrent, irresistible urges to pull out hair from your scalp, eyebrows or other areas of your body, despite trying to stop.” An estimated 2 to 4 percent of the American population lives with this condition (not to be confused with dermatillomania, a similar condition that instead involves picking at one’s skin). Most people, doctors included, haven’t heard of the disorder outside of the context of the TLC special (the television channel, not the learning resource), “I’m Addicted to Pulling Out My Hair!” Shockingly, these shows aren’t the best sources of information.

While there is still stigma attached to mental illness, the topic is becoming more normalized as people start to realize these disorders are, well, disorders. However, for the most part, it seems the world view of mental illness is narrow. Some illnesses are gaining increased exposure in the public eye, are treatable (to an extent) and seem to be easier to talk about. You can probably describe irrational sadness and general disinterest in activities. You can probably describe constant feelings of stress or extreme stress caused by specific situations. It’s harder to describe wanting to pull out your hair for no apparent reason.

For me, it’s easiest to attribute it to my anxiety. It’s way easier to tell someone you pull at individual strands of hair when you’re anxious than it is to explain it’s really just a comfort thing. See, even typing that feels wrong. It’s not just a comfort thing. It’s an addiction. (Maybe I am a TLC special.)

It’s not a glamorous mental disorder. It’s not a disorder you’ll see depicted in romance novels or Indie films with pretty girls in mental hospitals just trying to get better. It’s an awful disease, and there’s next to nothing known about it.

I’ll tell you what I do know about it. I know I’ve drawn in my eyebrows for four years. I know I’m afraid to wear my hair up, not only because of the bald spots forming behind my ears, but because I’ve grown so dependent on running my fingers through my hair whenever I’m thinking, reading or doing anything that doesn’t require the use of both hands. I know the bald spots behind my ears have grown so large that even when my hair is down, I have to wear a headband to hide them. I know antidepressants don’t help. I know, even when doctors tell you to sit on your hands to stop it, nothing will change. I know I avoid situations where I can’t wear makeup or risk my bangs blowing back from my forehead because I don’t want people to stare at me. I know none of it seems “normal.”

With there being no apparent cure for trich, there’s a good chance I’ll be battling this disease for the rest of my life. It’s not really the type of disorder that encourages sympathy, though. People don’t ask you if you’re OK or offer you help when you’re having a particularly bad episode. Best case scenario, they stare and say nothing. Worst case scenario, they ask you why you can’t just keep your hands still, and you ask yourself the same thing.

Talking about trich isn’t easy. It’s not a common disorder and, frankly, it can actually make people uncomfortable. Trich isn’t cute. It isn’t well-known, and it isn’t easily remedied. It’s something millions of people have to live with, though. So we might as well start talking about it.

I recently started seeing a therapist who specializes in trich. She mentioned people with trich tend to identify with it more so than people with other mental disorders. It wasn’t something I thought about before, but it’s true. My anxiety is an afterthought because my trich is so visible. It’s become a part of my identity. Yet, it’s a part I can’t talk about. I can read about it. I can write about it. Talking about it isn’t as easy.

I hope one day it is easy, and I know I can’t hold back if I want to reach that point. I can’t shut down when leasing agents ask if I have an undercut. I can’t freeze when my physician asks if I’m aware my hair is thinning at such a young age. I need to respond to these statements, answer these questions and foster a new conversation about trich. We all do, really.

It’ll never be easy, but it will be worth it.

Image via Thinkstock.

Originally published: August 24, 2016
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