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Here’s what it feels like: I’m a robot malfunctioning, stuttering, stuck in a frustrating loop. Like I’ve got an uncontrollable phantom limb that keeps rising to my head over and over, no matter how many times I knock it down. Like I’m caught in a prison of an instant of pleasure followed by hours of shame.
First comes the urge, then my hand is searching through my hair, looking for that elusive perfect hair. These hairs are darker, coarser, curlier than the rest.
Because they’re more substantial, the pain/pleasure is stronger, generating a more intense endorphin rush. But the rush is fleeting, and there are many more perfect strands to pull. In fact, as I am writing this my hand has reached up a few times, fluffing my still-damp hair. But I have not pulled today.
The official name for my disorder is trichotillomania (“trich”), although there’s been a push to relabel it with the clearer term compulsive hair-pulling disorder. It’s classified as a body-focused repetitive behavior (BFRB), along with compulsive skin-picking and compulsive nail-biting.
Researchers estimate that BFRBs affect 4% of the population, making it more common than bipolar disorder, OCD, autism, schizophrenia, general anxiety disorder, PTSD, or panic disorder. 80% of those suffering from BFRBs are women, and it’s the third most common disorder in women behind depression and addiction. Despite its prevalence, it’s one of the most poorly understood, misdiagnosed, and undertreated mental disorders. BFRB research only began 20 years ago with the founding of TLC, the Trichotillomania Learning Center.
I understand why people find hair-pulling repulsive. Unfortunately, that shame only buried my awareness of my habit. For years I was in complete denial, totally unaware of it. When it got worse I thought it was just a bad habit I could stop, that all I needed was more willpower. I knew nothing about the disorder, only that I felt I had someone else’s hands, a bucking horse I could barely control.
Luckily I realized I couldn’t face it alone. Along with behavioral therapy, I needed to address several accompanying issues: anxiety, depression, and a strong sensitivity to both sensation and emotion. It’s a disorder of isolation –- caught in a circuit loop, of pain and pleasure, apart from the world. Muscle memory, neural memory, and emotional memory –- a path I would walk down daily, over and over. As the pain subsided, I would reach again. And again.
I started pulling when I was 10, after moving to a small town where newcomers were uncommon. I was bullied that first year, and I’d seek solace in isolation, laying on the floor of my bedroom, door shut, engrossed in observation, looking at the hair newly growing on my legs. Here, fully immersed in myself, I could check out completely, free from bad memories and the anxiety of what the next day would bring.
Hair-pulling became my escape, but it was a destructive crutch –- a “maladaptive coping mechanism,” as they say in therapy.
After a hiatus in high school, I relapsed in college. I remember sitting in the middle of a Wordsworth class, finally realizing I couldn’t stop myself. My hands played constantly with my hair as I struggled to focus on the discussion. When I studied abroad, my pulling skyrocketed. My workload was at its heaviest; I had to read a novel, two plays, and write an 8-page paper every week. I would spend hours at the library in intense focus, my hands running constantly through my hair.
My danger zones for pulling are reading, writing, or being in front of a computer. Unfortunately, that takes up much of my waking life and work.
I returned from abroad and began an emotionally abusive relationship, and I was more depressed than ever. I went to my college’s free counseling service for anxiety, but when I told my counselor I pulled out my hair, she said nothing about trichotillomania. Yes, I downplayed it, saying I only pulled sometimes, but looking back I’m shocked she didn’t put two and two together.
She told me that it was a natural response to stress, so I stopped going back. What held me back was the stubborn belief that I was normal -– that my levels of stress and anxiety were not unusually high. And at the demanding college I went to, that was true. But it wasn’t a healthy level of stress, and I was causing a division in myself, between will and habit. I was tearing myself apart.
When I finally told my general physician 18 months ago, her first response was that my hair looked great (I had recently gotten a haircut and highlights). It confuses me that one of the diagnostic symptoms of trich is visible bald spots. By that point, the person is suffering from a severe case of trich. My physician gave me a prescription for an SSRI, even though they have been proven not to help with pulling. I hated how the drug made me feel like a zombie, so I stopped taking it after a month.
Thankfully I sought out a therapist who specializes in trich, and also began going to weekly group therapy sessions. I also started taking n-acetyl cysteine (NAC), an animo acid and antioxident that has shown remarkable success in reducing pulling. I’ve experienced no side effects, though heads up -– it may exacerbate asthma. Scientists are still researching the vitamin’s mechanism, and when I visited my new doctor for a checkup, she had never heard of it.
One of the most powerful experiences I’ve had during recovery was attending a TLC conference that presented the work of two Stanford professors researching trich: Dr. Joseph Garner, a zoologist studying trichotillomania in mice, and Dr. Matthew White, a psychiatrist performing fMRI on the brains of people with trich.
I didn’t realize how common trich is in animals; it’s been observed in primates, rodents, and birds. Dr. Garner began his talk with this statement: “If there is one thing I want to get across, it is that you are not at fault for trichotillomania. This is a disease. It is not a character flaw.”
He believes that trich causes depression and anxiety, not the other way around, and he’s searching for a genetic marker so that children can be screened and treated before they develop it.
Dr. White’s studies investigate the motivational circuitry of the brain, and how a disordered reward process is formed through cues (the urge to pull) and feedback (the pleasure from pulling). People with trich have naturally low levels of dopamine, and he thinks it’s related to the novelty-seeking, hedonic aspect of trich.
He also found the part of the brain activated during trich, which is different from the part of the brain triggered during OCD episodes.
Today, nearly two years after admitting to myself I had a problem, I am in recovery. I don’t pull at all most days, although once every few weeks I’ll slip up and pull a strand absentmindedly. It’s been a slow and steady progression, and it’s taken an exhausting amount of emotional work, but it’s been worth it. Here’s what’s helped me the most:
• Trichotillomania Learning Center (TLC): this foundation has an incredible amount of resources, including referrals to specialists, group therapy, funding research, and incredible conferences and retreats.
• N-Acetyl Cysteine (NAC): This vitamin has been even more helpful for me than behavioral therapy, and when I forget to take it, my pulling increases.
• Group therapy: it’s amazing to talk with others suffering, realize how similar our issues were, and talk about what has helped us in recovery.
• Individual talk therapy: focusing on related causes: depression, anxiety, negative self-talk, unprocessed fears, and a self-destructive tendency.
• Regular exercise: If you pull or pick, it’s likely that you have a lot of nervous energy. I know it’s hard to motivate yourself to work out when you’re depressed, but you’ll never regret getting some exercise.
• Hats: I wear a beanie almost every day, which is a helpful barrier. I used to be self-conscious about what people would think, but I know that my health is worth that risk.
• Yoga and meditation: learning to calm my mind and tune out obsessive thoughts has been essential to my recovery.
• Fiddle toys for my desk: for me, the most helpful has been floss, because it has a similar feeling as strands of hair. You can find other fiddle toys at the TLC store.
• ABSORB: “Aware of my Body, I Stop, Observe, Relax, and Breathe.” This mantra came from Pearls, written by Christina Pearson, the founder of TLC who is in full recovery from severe cases of both hair-pulling and skin-picking.
• Hypnotism: This helped me switch from pulling one or two strands a day, to having pull-free weeks. I was skeptical, but the hypnotist explained that a session is like talking to your unconscious and letting it know that you don’t need the habit anymore.
• Coming out as a hair-puller: The more people I tell, the less shame I feel. Though I’m not publishing this under my name, I’ll be sharing this essay with those close to me. Before I sought treatment, I couldn’t speak or even think about it without choking up and crying. I realize now that it’s not a deep flaw in me, and I have no reason to be ashamed.
It’s more than likely that you know someone who has a BFRB, and you can as an ally. If you see someone with bald spots or picked-over skin, react in kindness and not disgust. Don’t ask “Why can’t you just stop?” Spread the word about BFRBs, so that sufferers realize they are not alone, and treatment is available.
And if you have the budget to do so, considering donating to TLC. I’m a broke 23 year-old, but I hope to contribute in more significant ways in the future. I can’t express how important the recovery process has been to my overall health and happiness, and I hope others can find the freedom that I have.