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.”
“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.
This blog first appeared on HuffPost Personal, and can be read here