Like the comedian Amy Schumer, I have trichotillomania. Since high school, I’ve pulled out my eyebrow hairs and, occasionally, my head hair and eyelashes. I’m lucky enough to not have a severe case; even after a day of heavy picking, I can typically cover up the bald patches in my brows with makeup and blame any thinner areas on overplucking. Yet I’m all too familiar with the shame that Schumer and so many others with the little-known but fairly common disorder describe.
Pulling out my own hair feels gross and embarrassing, and although I know, rationally, that it’s a compulsion and thus not voluntary, it’s hard not to feel guilty for causing such damage to my body. The fact that trichotillomania is so rarely talked about in the media compounds those emotions; the less information and support available for a condition, the more isolated and abnormal those who experience it feel.
As a teenager and young adult, I didn’t even know that my tendency to repeatedly pull my eyebrows out had a name, let alone had millions of fellow sufferers.
This is why a major star like Schumer talking openly about the disorder and incorporating it as a plotline in her new Hulu show “Life & Beth” matters so much. In the penultimate episode of the semi-autobiographical dramedy about a successful woman reflecting on her past, a young version of Schumer is seen being fitted for a wig while a therapist informs her mother that Schumer has trichotillomania. It’s a moving, evocative scene, made all the more important by the star’s March revelation that, like her character, she’s long lived with the condition. “I thought putting it in there would be good for me to alleviate some of my shame and maybe, hopefully, help others alleviate some of theirs, too,” Schumer explained to The Hollywood Reporter.
Last week, she said that instinct had proven correct. She told radio host Howard Stern that while she felt “ugly and unlovable” growing up, and even today still has “so much shame” about the disorder and its impact on her life, speaking publicly about her experiences has helped her let go of some of that shame and “accept” the trichotillomania as part of who she is.
It’s certainly been helpful for me. Hearing Schumer speak openly about her condition and her feelings about it has been a necessary reminder that I am not alone in my struggles and shouldn’t feel ashamed about them, either. This conversation is fairly new; as a teenager and young adult, I didn’t even know that my tendency to repeatedly pull my eyebrows out had a name, let alone had millions of fellow sufferers as well as a therapeutic path for treatment.
If I had known, I certainly would have felt less ashamed, and I may have even reached out to others for support. I would have taken comfort in knowing that, although pulling out my hair may have made me feel “weird” or “wrong,” I was actually far more normal than I realized. While the cause is unknown, research has indicated that both genetic and environmental factors may be involved, and many people with trichotillomania also have similarly compulsive conditions like obsessive-compulsive disorder or skin-picking disorder.
In reality, trichotillomania is far more common than it might seem. Massachusetts General Hospital’s Center for OCD and Related Disorders estimates that 1 to 3 percent of the U.S. population is affected by the condition. Women are far more likely than men to be diagnosed, and the disorder usually arises in early adolescence (although it can start at any age and, as in Schumer’s case, last through adulthood). There are also tools such as cognitive behavioral therapy to address it. In CBT, therapists help patients with trichotillomania work to change their thought patterns around the behavior and find other, less harmful ways to channel their compulsion.
But because of the silence that existed — and still largely does — around trichotillomania, it wasn’t until my late 20s that I came to understand that my condition was both widespread and treatable (if not curable), due to the combination of a good therapist and a friend who opened up about her own struggle with the disorder. I’m thankful for both, but I’m frustrated that I spent so much time unnecessarily feeling bad about something that is both common and out of my control.
By revealing her experience with trichotillomania, Schumer and celebrities like her (including actor Olivia Munn, who spoke out years ago about having the disorder) are helping to erase the stigma that’s long existed around the condition and providing it with much-needed visibility.
As a teenager, I couldn’t imagine telling a soul how often I pulled out my eyebrows, let alone writing about it in an article. All that silence, though, didn’t make me feel any better or make the behavior go away; rather, it just served to make things worse. I’m grateful, then, for people like Schumer who are cutting through that silence to tell those who have trichotillomania that they are not as alone as they feel — and in fact, they have a support group made up of millions of other people just like them.
Rachel Simon is a writer and editor based in Raleigh, North Carolina. Her work has been published in The New York Times, Glamour, Vulture, Teen Vogue and more. You can find her at @Rachel_Simon.