A personal exploration of trichotillomania, or “hair pulling disorder.”

by Aparna Vidyasagar

illustration by Grace Molteni

I lean into the mirror, my nose nearly touching its surface. I want to get a good look. The hot mist of my breath blots out my reflection, but I’ve already seen what I needed to see.

My eyelash line is a Morse-code landscape.

Dots and dashes: Lashes and patches of empty skin.

I shouldn’t be so surprised. After all, I did this to myself.

***

I can’t quite remember how it all started, but certain memories stand out: The feeling of fascination at the ease with which my lashes came out with only a quick tug; how they looked in the palm of my hand; and how they felt as I rolled them between my fingers. I remember my first grade teacher in Canada having a chat with my mother one day after I had razed my lash line and decimated much of my eyebrows. At age seven, I surreptitiously plucked at the corners of my eyelids as I lay in bed in my new home in India. My high school friends, who watched my hand stray absently to my eyes as I concentrated on the blackboard, simply assumed it was a quirky bad habit.

Even as I type these words, I run my fingers over my lashes.

Giving in to this overwhelming urge to pry hair away from one’s body unites those with trichotillomania, or “hair pulling disorder.” In a study of 60 patients with trichotillomania, the average age at which the condition started was 13 years. But younger (earlier than 6 years of age) and adult onset have also been reported. 

Researchers have refined the hallmarks of the disorder over time. Those with the condition pull hair from one or more places on the body: hair on their head, eyebrows and eyelashes, or in some cases pubic hair. However, the hair loss doesn’t have to be noticeable. Those with trichotillomania often make attempts to conceal their hair loss, or spread out the pulling so there isn’t one single empty patch of skin. The act of pulling creates a sense of gratification for an instant but leads to a range of stressful effects, from making social interactions uncomfortable to anxiety and depression. In 2000, Canadian researchers conducted a small study with seven women and collected anecdotal descriptions of living with the disorder. One woman, identified as Ms. B spoke of a fear that her habit would be noticed, saying, “I spend a lot of time trying to find good ways of camouflaging my bald spots. […] Oftentimes it becomes too overwhelming and I find it easier to just stay at home.’’ Finally, those with trichotillomania make repeated attempts to stop pulling.

But if you had to put trichotillomania in a box defined by what is presently known, you’d find that its contours are still shifting. It used to be considered an “impulse control disorder.” Now, it is classified with obsessive-compulsive disorders (OCDs) and other related disorders (like skin picking disorder and hoarding) in the latest edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) released by the American Psychiatric Association released in 2013.

“[Trichotillomania] has characteristics of impulsivity and compulsivity, so for that reason it is hard to put it in any one particular category,” says Christopher Flessner, a clinical psychologist who researches trichotillomania risk factors in children at Kent State University. The “impulse” of course, is to pull hair, and the feeling of “compulsion” leads to repetitive pulling. But Flessner says trichotillomania differs from  behavior associated with OCDs because there is little to no evidence of obsession driving the act of pulling; no feeling that “something bad will happen” if one doesn’t pull, for example.

“I think the general feeling now, is that its characterization is better than it has been previously,” Flessner says. The changing classification reflects a better understanding of the condition. “But it probably still doesn’t do a great job of describing what it’s like to have trichotillomania,” he adds.

I’ve never thought in terms of impulses and compulsions. But as I moved into adulthood, my trichotillomania settled into some distinct patterns. I’ve learned to tug at my eyelashes with just enough pressure that they usually don’t give way. In a way, I suppose I’ve simulated the act of pulling and somehow mitigated the damage. I find myself doing this every so often — at night, as I fall asleep, or as I am reading, typing, or thinking. Sometimes I do this because I want to. At other times I suddenly become alert to the fact that my fingers are running laps over my eyelids. If I find that I have lost some eyelashes as collateral damage, I will myself to stop. But that only works for a little while – a few minutes or a few hours.

Those are good days.

When I am troubled or stressed in some way, I let myself tug a little harder and my lashes slide right out. This is when I start flailing in quicksand, sinking deeper into the mire. The relief and satisfaction I feel for having pulled is immediately replaced by guilt for having done this to myself, shame for not being able to control myself, and insecurity about how ridiculous my eyes must now look. Mascara has become both a savior and a crutch. But it’s not just about physical appearance. Even on days when I know the damage is not noticeable, I feel as if I am in disequilibrium. When the gaps and patches are large, my eyes feel dry without lashes to protect them.

Estimates of how many people have trichotillomania have been somewhat amorphous, varying from 0.6 percent to 3.4 percent of the global population. The current, somewhat conservative estimate, according to a review article by Flessner and his colleagues, is that about 3.7 million people in the United States have the disorder. Research also suggests that the condition affects more women than men.

The underlying causes of the trichotillomania are still an area of exploration. Research studies from the 1990s found that in families where at least one member pulled hair, there was an increased rate of pulling among “first-degree relatives” — that is parents, children or siblings. Though this suggests some type of genetic component to trichotillomania, this behavior could also be a result of imitation, especially between siblings or between parents and children. In the last decade or so, research on genetic mutations has mainly been conducted with mice and some small-scale human studies. Researchers believe that fur and whisker biting in mice, a phenomenon called barbering, serves as a model for OCD and related disorders, including trichotillomania. Mutations in two genes have emerged as potential risk factors, but further studies need to be done. There is also evidence to suggest that anatomical changes in regions of the brain may also influence trichotillomania symptoms.

For a little more than 20 years I had no idea that there were others like me, or that there was a name for what I did. Finding out that I have trichotillomania gave me a vast amount of closure. I wasn’t pulling because I wasn’t strong enough to stop, but because there were other forces at play; forces that I could never have understood. The “whys” and “hows” simply faded to the background.

However, I do think about the possibility of change.

There has been some success in treating hair pulling symptoms by regulating serotonin uptake in the brain, primarily with clomipramine, a drug generally prescribed for patients with OCD. The amino acid N-Acetylcysteine has also been shown to reduce symptoms in a clinical study. At present, there are seven clinical trials looking into trichotillomania treatments, both with medications and behavioral therapies. Five of these are still recruiting patients.

Douglas Woods, a clinical psychologist at Texas A&M University, specializes in using Acceptance and Commitment Therapy (ACT) to treat trichotillomania, particularly for “focused” hair pulling. This type of pulling is intentional, where one has negative feelings and “pulls to feel better.” This is opposed to “automatic” pulling, where the person is simply not aware of their actions, or is “on auto-pilot,” as Woods describes it.

According to Woods, ACT teaches patients to become accepting of their unpleasant thoughts and emotions, instead of trying to fight them. In the case of trichotillomania, the act of pulling is in itself a way to control such feelings. ACT also has a ‘values’ component where patients remind themselves of their reasons for undergoing therapy, their long-term goals, and the benefits of reversing their habits.

Woods believes one of the challenges with ACT is that its basic premise goes against what we are trained to believe from an early age: that “we shouldn’t feel bad things.”  So, in the long term, patients may feel the need to rid themselves of these thoughts and feelings, and revert to habits that make them feel better.

“People get very scared when they think about the idea of just letting an unpleasant experience be there and not try to control it,” says Woods. “Sometimes that becomes very difficult. Sometimes successful treatment with pulling doesn’t last.”

My story is incomplete and evolving. After having pulled my eyelashes for more than 25 years, I feel as if this is a part of who I am. It’s hard to imagine another “pull-free” version of me. At the same time I wish to not hit those depths of guilt, shame, insecurity and anxiety. I wish I had the freedom to walk out of the house without a single coat of eye make up; without scrutinizing my lashes from different angles each morning. Such freedom would be a relief.

“Trichotillomania is strange. It’s a devastating disorder in many ways, but it’s also unlike many disorders because it’s one you can conceal,” says Woods. “Sometimes, when you ask a person with trichotillomania, ‘Do you really want to stop this?’ the answer, if they are really honest, is, ‘not really.’ They don’t like the effects of it, but the pleasure and relief the behavior brings is very powerful.”

For those looking to learn more about trichotillomania, the Trichotillomania Learning Center provides information and resources.

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Aparna Vidyasagar is a freelance science writer who writes about life-sciences research and health. She lives in Portland, Oregon. Follow her on Twitter @aparnavid.

Grace Molteni is a Midwest born and raised designer, illustrator, and self-proclaimed bibliophile, currently calling Chicago home. For more musings, work, or just to say hey check her out on Instagram or at her personal website.