LIFESTYLE
03/06/2019 8:50 AM IST

What It's Really Like To Have The Hair-Pulling Disorder Trichotillomania

I think of each hair as a problem, and once it’s out, it’s a problem I no longer have to deal with.

Micaela Walley
The author is trying to gain a better understanding of her trichotillomania.

I was 5 when I pulled out my first eyelash behind my father’s girlfriend’s couch. It was two years after my parents’ divorce and a year into living with my grandparents during the week, only seeing my dad on the weekends. I had watched my mom do it all the time — tug at the ends of her eyelashes until they detached, laid flat in the palm of her hand ― repeatedly. It looked like it felt good, so I did the same. Tugged as hard as I could until one fell loose and twirled it around between my fingers, delighted with its tangibility.

I asked to borrow the phone. I called and let my mom know that I’d done it. I’d pulled a whole eyelash out by myself! I heard the panic in her voice as she told me to stop. I couldn’t stop though. It was too late. I pulled a dozen more out along with that first one and wished on all of them that someone would take me back home.

***

In second grade, my teachers began noticing small piles of eyelashes stacked on my desk during classes. My mom was notified, and she took me to the doctor, who was quite passive about the whole thing.

“It’s just hair,” he noted, explaining that there was nothing much he could do. He breezed past the word “trichotillomania” at some point, which sounded big and scary to me, but then he just suggested therapy and sent us home.

When we left the doctor’s office, I asked my mom if this meant I would be going to therapy from now on. She shook her head no. We couldn’t afford it.

“Don’t worry. You’ll grow out of it just like I did,” my mom said.

My mom didn’t know much about the disorder at the time and that doctor’s appointment was the first time she’d ever heard about it from a professional. He led her to believe there was nothing to worry about.

“As soon as you get to the age where you want to wear mascara and you don’t have anything to put it on, you’ll grow out of it,” she later clarified.

By the onset of puberty, I was completely without bottom or top eyelashes on both of my eyes.

While she’s never fully rid herself of her trich tendencies, my mom is able to limit herself to only pulling out a certain amount of hairs from a variety of spots on her eyelids so that when people look at her, it looks like nothing is missing. Her lash line is thin, but it is there.

I clung to this hope for a while, but unfortunately, it didn’t turn out to be true. By the onset of puberty, I was completely without bottom or top eyelashes on both of my eyes. While I longed to wear makeup like the rest of the girls in school, nothing ever topped the longing I had to pull out my hair.

***

I could feel the girl staring at me from the corner of my eye. She’d been staring for a while, but I tried to ignore it as my sixth grade teacher droned on about the importance of mitochondria. I looked down, looked away, tried to seem invested in the lecture, but it was too late. She’d noticed, and I knew she was going to say something.

As soon as our teacher declared it was study time, there was a tap on my left shoulder. I angled my body toward the girl sitting next to me who was now wide-eyed with curiosity.

“What’s wrong with your eyes?” she asked.

She knew what was wrong, what was missing, but wanted to hear me say it.

“What do you mean?” I asked, heart pounding. People around us began to stare. I noticed some had gotten quiet, listening in.

“What’s wrong with them?” she asked, emphasizing how wrong it was.

Before I could respond, she’d already gotten the attention of the girl sitting next to her.

“Look! She doesn’t have any eyelashes!” she said, leaning closer to me as her eyes shifted back and forth from one of my eyes to the other.

“That’s so gross,” her friend said, peering over at me like some kind of experiment.

I looked away from them, pretending not to notice as they began discussing possible reasons I didn’t have eyelashes, how they always knew something looked off about me.

“Does she have eye cancer?” “I bet she’s wearing a wig.” “Was she born that way?”

I scooted down in my chair, looking straight ahead. I wanted to beg the teacher to begin teaching again, to shush them. I was sure they were talking too loudly. I couldn’t say anything though. People were staring at me. The girl tapped my shoulder again. I peered over at her.

“What’s wrong with you?” the girl asked, having talked herself into being concerned.

I shook my head. I wished I had an answer for her.

If I’m unable to pull out a hair as soon as I notice it, it’s hard for me to focus on anything else. Even as an adult, I have left parties early and taken long lunch breaks just to allow myself the space that I need to pull out a single lash.

***

In high school, I went searching for YouTube makeup tutorials for people with no eyelashes and I came across a video documentary clip of a woman with trichotillomania. I was amazed at her openness about the issue, pointing out various bald spots on her eyebrows and eyelashes to the camera, lifting up her wig to reveal a complete lack of hair. I felt relieved to know that someone with my disorder was brave enough to speak up about it. I watched the video several times, trying to memorize how she explained the disorder and her experiences with it so that the next time someone asked me about it, I would be ready.

There have been times when I have hated the way I look without eyelashes, but I never once hated the act of pulling. I love the rush of endorphins that I get when a hair is removed, placed onto the mirror or into my hand. I think of each hair as a problem, and once it’s out, it’s a problem I no longer have to deal with.

I can spend hours in tweezing sessions, curled up in the bathroom sink, eyes pressed against the mirror. If I’m unable to pull out a hair as soon as I notice it, it’s hard for me to focus on anything else. Even as an adult, I have left parties early and taken long lunch breaks just to allow myself the space that I need to pull out a single lash. My eyelids swell from how much I’m feeling the hair, irritating it, hoping that it will fall out and release the pressure that has built from my inability to relieve myself. However, relief is always met with the shame of knowing that there is no way to hide what I do to myself. I wear my mental disorder on my face. When someone looks at me, they are looking directly at my weakness.

***

Growing up with a disorder that no one knows about made the internet my No. 1 source of validation that my mom and I weren’t the only people dealing with these symptoms. After that first doctor’s appointment, I craved resources that would help me better understand my disorder. However, there just wasn’t (and still isn’t) enough information on the disorder beyond medical terminology. Even on my countless internet searches throughout the years, there are still several unknowns, like a defined cause, that I’d like to see answered in my lifetime. However, this is what I’ve learned :

Trichotillomania is a mental disorder characterized by a compulsive pulling out of one’s hair, resulting in hair loss. It can be any hair, but I’ve felt the urge to pull out hair from almost all of the regions of my body, but my main temptation has consistently been my eyelashes.

Trich falls on the spectrum of being an obsessive-compulsive and related disorder, depending on when and why the person pulls. I started off pulling lashes that seemed out of place, ones that were too long or too short and eventually this developed into me pulling simply for the pleasure of doing so.

For me, and most others with the disorder, trich comes with shame, humiliation and embarrassment, which often develop into low self-esteem, depression, anxiety or substance abuse. In the past, I have avoided many social interactions, including job opportunities, or any other situations that would force me to be seen up close and personal. This leads to extended periods of isolation.

Most people, myself included, develop trich as preteens or early teens, and it is more common in women. The illness became a part of me before I even knew it had a name.

All of this information was completely useless in my attempts to explain it to other people, to make it sound less “gross.” What helped me more than anything was hearing that woman from the YouTube video talk openly and honestly about her life with trich; seeing that someone else was actively living with these symptom lists, which so often fall flat on the page, made me feel less alone.

Now that I’m an adult, I want to take responsibility for my own mental health and gain a better understanding of my disorder instead of trying to hide and suppress it.

 

***

Currently, as a 23-year-old woman, I am five months into going to therapy for my disorder. Now that I’m an adult, I want to take responsibility for my own mental health and gain a better understanding of my disorder instead of trying to hide and suppress it. While I know trich is something I will live with for the rest of my life, I also know there is value in talking about it, acknowledging its reach across the majority of my behavioral patterns, and attempting to limit its negative effects. While there isn’t a cure for trich, I have learned that self-acceptance can be a cure for the incurable, or at least it has felt like a cure for me.

The reality is, I am seldom ready to reveal what feels like my biggest secret to those who ask. Many people, especially strangers, feel entitled to the answers that have taken me my entire life to find. When I tell people about my disorder, the reactions are vast and often give me whiplash. Some shrug it off as not a big deal, as if the hours I spend pulling baby hairs from beneath the skin — eyelids bleeding, vision blurry — don’t matter. Others are confused and concerned, as if it were contagious and I, the contagion. Despite this, I know now that hiding does no good for anyone and only contributes to the stigma that keeps people with trich from sharing their experiences.

My hope is that, with therapy, I can learn to be a better advocate for myself regarding my disorder, but also that I can eventually become an advocate for other people with trich as well. I would like to see myself contributing to the growing community of people working on trich visibility in the mental health community. I know how much these stories would have meant to me when I was younger. I know how much it would have helped sixth grade me to know that my disorder was not just some intimate quirk with a cumbersome name. If me exposing my disorder to the world is what it takes to make one person feel less alone, then so be it.

Dr. Flint Espil, clinical assistant professor of psychiatry and behavioral sciences at Stanford, provided editorial guidance to ensure the accuracy of clinical descriptions of the condition.

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