The Guts of the Fish

With my hair pulling worse than it’s been in months—maybe even years—I’ve been reflecting on the role that trichotillomania has in my life, and how this interacts with my writing practice. The past year has represented a pivot in my life, a shift toward embracing what was, for nearly two decades, a secret and shameful part of my identity. I have gone public about my compulsive hair pulling, and I have written stories about my experience. I have chosen this path, both because of my desire to spread awareness about a cause that is too often misunderstood and neglected, but also because it’s the subject I feel I know best. As a writer, I want to write about what I know well, to share the story that ensnares, fascinates, emboldens, and haunts me all at once. So, in essence, the relationship between my hair pulling and my writing, the wooded road connecting these two lives, goes two ways: my writing can be used as a vehicle to heal my hair pulling, and my pulling can bring energy and purpose to my writing. This synergy has provided me with a sense of direction, even in the midst of the self-doubt I have faced thus far in my post-graduation life.

At the same time, I experience pulling episodes that occur daily and span several hours, leaving me with calloused fingers and permanent damage to my scalp. I have often used my writing to dispel the notion that trichotillomania is a self-injury, and I stand by that. But I also look in the mirror and see that I have, despite my intention to soothe, injured myself.

I’m trying to reconcile my daily, suffocating struggle with the fact that I have, in my writing, marked myself as a success story. I have painted myself as someone who has overcome the shame associated with this disorder, who has not been cured, but is healed. If I am truly healing, then why do I find myself so often beaten down by exhaustion and defeat? Is it possible to relapse, to regress, from a state of such resounding acceptance? Or was reaching this precipice just an illusion all along?

I am coming to understand that there are limitations to the written word, that in an effort to create a cohesive, concise, accessible narrative, I have gutted the slimy fish that is my hair pulling life. I can present a shell, the skin and bones of my experience, but have thus far been unable to venture inside the fish, to bring the reader into the squishy innards that make my daily existence so challenging. I have used writing to take the raw components of my experience, which are incomprehensible to most of the population, and mold them into a story that can be easily digested by the public at large. My words capture the clean shell, but this shell can be misleading. 

Perhaps I’m being too hard on myself. Maybe it makes sense to take baby steps into the unknown world of healing and self-acceptance. And yet, some part of me feels disingenuous—I know that the meat and the source of my shame lie in the guts of that fish, and I have chosen not to go there. In a workshop I attended at the Omega Institute two summers ago, author Cheryl Strayed discussed how, for her, the purpose of memoir writing is to teach us how to be human. I don’t want to only provide scaffolding for my story, imprisoned by my fear of overstepping some boundary, of being perceived by others as the disgusting, worthless person I once believed myself to be. I don’t want to go halfway. I want to be uncomfortable, to grapple on the page the same way I grapple in my daily life. My kernel of humanity, I know, rests in the messiness of my existence, and I want this to be reflected in the words on the page. I want to create a story, but one that dwells in the space of my continued vulnerability. That, I believe, is where the best writing is produced. It is where I am most unguardedly human.

I think part of the solution entails using my writing to venture outside of the immediate sphere of my hair pulling. Ironically, I have become so comfortable with writing about and sharing this issue that I am staring it too directly in the face, fashioning it as the centerpiece of my life when it is merely one component of a larger and more dynamic arrangement. I need to explore the landscape within which it operates. The deeper level of my hair pulling, I believe, rests outside of the immediate scope of the disorder itself.

I once heard it said that rock bottom has ledges, different shelves that serve as false bottoms. I think I came upon a certain ledge in my recent state of opening up about my trichotillomania. But there are other, more profound, shelves to be landed upon. I hope that I will harness my continuing struggle with hair pulling, my sustained vulnerability, to push myself deeper. It’s time to move into the guts of the fish. 

Response to a Misguided Clinician

This week a new blog post came out on Psych Central: “Trichotillomania in Childhood and Adolescence: When Anxiety Becomes Self-Injury.”  The article was written by Mihaela Bernard, MA, LCPC, a licensed counselor in Chicago. Normally, I am relatively immune to the stigma, judgment, and bullying that comes from having a disorder that is as misunderstood as compulsive hair pulling. But reading Mihaela's words this morning, gorging myself on my mom’s delicious cranberry sauce left over from Thanksgiving, I found myself nauseated. Not only because Mihaela uses words like “disturbing,” “concerning,” and “embarrassing” to describe trichotillomania, thereby reinforcing the sense of fear and isolation that hair pullers face. Not only because this clinician fails to understand even the most rudimentary components of this disorder, in spite of her seeing numerous trichotillomania patients, and consequently spreading misinformation about an already disparaged condition. But, above all, because this woman is interacting with and treating individuals with trichotillomania. As someone who spent her childhood among therapists who told me to “just stop” and “quit so I could look pretty again,” I know how frustrating, even traumatizing, it is to seek out treatment from someone who has limited understanding of your behavior. In this article, Mihaela shows that she not only doesn’t understand trichotillomania, but also the basic mechanisms through which mental health conditions develop and persist. In a world where seeking help is a critical, oftentimes exceedingly difficult step for those suffering from mental illness, ignorance such as this is unacceptable.

1. The title. First of all, the implication that trichotillomania is a byproduct of anxiety is an over-simplification that points to a lack of knowledge about hair pulling, but also of mental health as a whole. Trichotillomania is its own discrete, self-contained condition. Anxiety often plays a role in the lives of hair pullers, but that relationship is complex and nuanced, a far cry from the cause and effect model proposed by Mihaela. In fact, much of my hair pulling is not triggered by anxiety at all, but by the polar opposite: boredom. Under-stimulation can also bring on urges to pull—many hair pullers struggle while watching television, talking on the phone, or lying in bed. Hair pulling is a compulsion that, as Dr. Fred Penzel suggests in his book The Hair-Pulling Problem, relates to the body’s need to return to a state of equilibrium. Can anxiety factor into this? Of course. But it is not the only factor, and is certainly not the root cause of the behavior. Like all mental health conditions, trichotillomania is part of a complex web of intersectional forces that bring about various behaviors, thought patterns, and emotions. Hair pulling is not a symptom, but a freestanding disorder.

Mihaela’s designation of trichotillomania as “self-injury” is simply incorrect. There is research that confirms that trichotillomania is non-self-injurious, but I also can corroborate that from personal experience. Self-injury, such as cutting, is an intentional and often highly premeditated act that is done with the intent to inflict hurt. For me, the feelings of pain that my cutting produced allowed me to feel more alive—the wounds themselves served as physical evidence of my own existence, a fact that I questioned in the throes of intense, numbness-inducing depression. My hair pulling, on the other hand, is an unconscious act that arises out of momentary, visceral impulses. Pulling out my hair is not painful. It does not counteract other feelings of pain or numbness. I feel relief when I pull, but not because I have successfully injured myself—I feel relief because the act is physically soothing. Pulling is not meant as self-punishment (it feels too good to serve that role) and it is the consequence of an uncontrollable impulse as intense as the urge to scratch a mosquito bite.

2. Equation between trichotillomania and OCD. “This is very similar to the experience of people who struggle with obsessive compulsive disorder.” The comparison of trichotillomania to OCD is not uncommon. In fact, it’s one of the most typical misrepresentations associated with hair pulling. Here, Mihaela is suggesting that they are similar in the “sense of building pressure or tension” that accompanies the behaviors. But this is misguided. While people with OCD engage in repetitive behaviors (such as compulsive hand washing), they do so in order to avoid an anticipated negative consequence. The behavior itself does not provide calm or relief—rather it makes the sufferer feel that he or she has escaped some sort of harm. Conversely, with trichotillomania, I pull my hair because I feel a sudden urge to do so; this has nothing to do with a conscious desire to relieve my anxiety or fear. The accompanying relief comes from the feeling of the act itself, not the sense that I have dodged negative outcomes.

3. Demeaning language. Mihaela writes that most people end up in treatment after their peers, teachers, or friends express concern about their behavior. This, in turn, provides further embarrassment and anxiety, “adding additional stress to an already anxious mind.” An already anxious mind? I consider my mind to be full, complex, and unique. I experience anxiety at times, just as everyone does. But labeling my mind as ‘anxious’ because I happen to have a complicated and challenging disorder is belittling and downright offensive. It reinforces the otherness of the disorder, feeding into the “me versus you” mentality that is at the core of stigma surrounding mental health. Mihaela then goes on to write, “How do we make sense of this disturbing and concerning symptom in psychoanalytic psychotherapy?” To me, the true question is how to make sense of an article that claims to be supporting those with trichotillomania while it uses language as overtly disparaging as ‘disturbing’ and ‘concerning.’ In a world where shootings and bombings are a daily occurrence, we are hardly at a loss for sources of distressing behavior. Individuals with trichotillomania, a condition that is proven to be highly genetic as well as hugely uncontrollable, suffer from significant social, physical, and emotional wounds, none of which are their fault. The use of judgmental language to describe their struggle is inexcusable, and only reinforces the most debilitating aspect of hair pulling: feelings of shame and isolation.

4. Framing trichotillomania as self-injury. Mihaela writes that, “Trichotillomania is a form of communication that cannot be otherwise put into words. It is an unhealthy and dysfunctional coping mechanisms to handle a stressful, overwhelming or threatening situation.” Trichotillomania is in no way a form of communication. It is not a choice or a form of self-expression, conscious or otherwise. It’s a compulsion, an impulse that feels physical by nature—like I said, similar to the urge to scratch a mosquito bite. I do not pull out my hair to make a statement or to communicate something that ‘cannot be otherwise put into words.’ I use words all the time, and I use them purposefully. I don’t use trichotillomania as a way ‘to handle a stressful, overwhelming or threatening situation.’ I don’t use hair pulling for anything—rather, it uses me. People with trichotillomania do not manipulate their hair pulling as a device to send a particular message. Most of the time, we are not even aware of how we may have been triggered in any particular moment. Rather, we are controlled by the disorder itself; many of us struggle to simply get through our days, overwhelmed by the compulsion to pull. Mihaela incorrectly assumes that trichotillomania involves agency and a purposeful decision to communicate in a particular way. She makes trichotillomania into a self-injury, and, even more, her words suggest that the blame rests with the individual.

5. Condescends hair pullers in the therapeutic relationship. Mihaela concludes her article by describing what she sees as the key responsibilities of a clinician in treating trichotillomania: “to help the client find words for the unspoken experiences that cause the irresistible behavior of hair pulling and replace it with healthier ways to manage the anxiety, fear and overwhelming feelings.” Again, the assumption that wordless experiences ‘cause’ the hair pulling behavior is simply false. There is no neatly defined cause and effect relationship related to hair pulling, or any other mental health disorder for that matter. In my experience, hair pullers have no harder time with expressing themselves than anyone else in this world. Certainly many of us may have had traumatic experiences, and some of those experiences could have contributed to our development of trichotillomania. But most of us are not aware of the complex set of factors that contributed to our hair pulling. Trichotillomania has been linked to genetics and family history, and it is unlikely that one discrete cause will ever be identified.  

Treatment of trichotillomania does not consist of a therapist helping an individual ‘find words’ for experiences he or she has had—I wrote a book about the traumatic experiences I’ve had, 75 thousand words of experiences, and I still pull out my hair on a daily basis. Treatment of hair pulling should be highly nuanced, sensitive, and relevant, not grounded in the assumption of a cause and effect psychological relationship, nor the pedantic supposition that the therapist help the patient find an alternative, healthier means of communication—in essence, by saying, “use your words,” as if a hair puller were a petulant child.

I would urge Mihaela to attend one of the Trichotillomania Learning Center’s annual conferences. There, she will find hundreds of complex, beautiful individuals who are bursting with words and a myriad of emotional, physical, and psychological experiences. These people engage in body-focused repetitive behaviors (BFRBs), not as an attempt to injure themselves, but because they feel the overwhelming, uncontrollable compulsion to do so. For all of them, trichotillomania (or their respective form of body-focused repetitive behavior) is its own, self-contained experience. It is not a symptom, nor an effect. It is a disorder, one that threatens to dominate their lives. They have all faced feelings of disparagement, judgment, and isolation, from peers and clinicians alike. People who attend the conferences have discovered, as Mihaela writes of what she hopes to provide as a therapist, a “safe space.”

Perhaps the most disturbing part of Mihaela’s article is that she is not alone. Despite the excellent resources and information provided by organizations such as the Trichotillomania Learning Center*, as well as a growing body of empirically supported scientific research on body-focused repetitive behaviors, we still have clinicians who fail to understand the basic components of these conditions. Not only that, but they are playing an active, if unintentional, role in reinforcing the stigma associated with mental illness. I can only hope that, with the expansion of research initiatives and greater vocalization by the trichotillomania and BFRB community, this trend will begin to change.

 

*The Scientific Advisory Board of the Trichotillomania Learning Center has put together a comprehensive guide for the treatment of trichotillomania and other body-focused repetitive behaviors. Here’s the link: http://trich.org/dnld/ExpertGuidelines_000.pdf.

Hello!

Hi everyone! Welcome to The Hairy Truths. I’m starting this blog because I have two obsessions in life: writing, and pulling out my hair. I’ve been noticing a strange synergy between these recently, which has prompted me to chronicle my journey with both: writing about pulling out my hair, pulling out my hair over my writing, and generally the ways that these experiences weave themselves together around the scaffolding of my life. First of all, it’s worth clarifying that when I say “pulling out my hair,” I’m not using the common English idiom. I don’t mean that I’m stressed, or crazed, or anxious (though I am, oftentimes, all of these things). I mean that I quite literally pull out my own hair. I am 24-years-old and have been plucking since the age of eight. This is part of a little known, but alarmingly common, disorder called trichotillomania (trick-oh-til-oh-mania). Trichotillomania is classified as a body-focused repetitive behavior (BFRB), and it affects 15 million Americans alone. 2 in 50 people have a BFRB, most commonly either hair pulling or skin picking.

The New York Times reported that the average American knows 600 people. This means that you probably know 24 people who pluck their hair or engage in similar behaviors. Don’t believe it? I didn’t either, until I began opening up about my hair pulling, and discovered that nearly every person I talked to either pulled his or her hair, had tried at some point, or knew someone who did.

It’s shocking how things that seem rare, the things we figure we don’t have to worry about, are actually just extraordinarily well-hidden. Sufferers of trichotillomania almost always feel the need to hide what they do. My theory: society tells us to hide because our behaviors are deemed unacceptable, which compels us to hide, and that in turn reinforces society’s view of their unacceptability. In fact, disorders like trichotillomania are three times more common than anorexia. And yet the issue has gotten hardly any attention, neither in the public nor in scientific communities.

I used to think that, for the most part, everything that could be said had been said, in one way or another. Or, at least, every salient topic that existed had some degree of written work associated with it. But when I began to integrate myself into the BFRB world, when I realized that these disorders are common and debilitating, it became clear that there is a mismatch in the trichotillomania narrative. Hair pulling is prevalent, the suffering it causes immense, and yet it has gotten almost no documentation.

It’s important to note that I did not go down the jagged path of a writing career so that I could fulfill this need for literature on compulsive hair pulling. I write because I go crazy when I don’t. Also because words fascinate me, move me, make me laugh and cry and scream at any given point during the day, sometimes all at once, and often so that I become so whiplashed that I end up collapsing in bed each night in a heap. And I’d go nuts if I didn’t.

Maybe I sound crazy, and maybe you already thought that the moment I owned up to obsessively pulling out my hair. Either way, writing for me is a bundle of a million motives and moving parts, most of which I still don’t understand. But I have the itch—what more evidence do I need that this is what I should be doing?

My struggle with hair pulling is not the impetus behind my writing. But, at least in this moment, it’s what I’ve been moved to write about. Writing is all about urgency—if we don’t have a pressing need to spend lonely hours yanking words out of our guts and onto paper, then we won’t—and the hair pulling community that I’ve found provides just that. I understand that I have the ability to help many people who would not otherwise be helped. Simply through the succinct message: You are not alone. The vast majority of the struggle with trichotillomania relates not to the behavior itself, but to the feeling of shame and isolation that having the disorder brings on. These ailments (shame and isolation) are one hundred percent curable.

I’ve been given huge amounts of privilege in my life. The privilege of attending the schools I’ve wanted to, of getting support for my hair pulling from friends, family, and clinicians, of having the time and space and financial support to be able to spend my days doing what I love and not what allows me to survive. It’s hard for me to not feel, at least in part, responsible for bringing words to this issue.

I’ve often been asked if writing helps me manage my own hair pulling. The truth: absolutely not. In a behavioral sense, writing actually worsens my hair pulling, because writing involves being alone and thinking and feeling at intense levels, which tend to be key ingredients for my plucking. But, as I mentioned before, trichotillomania for me is way more than a behavior—the hardest part of living with it has to do with the emotional consequences. And, in this respect, writing does a beautiful job of helping me to cope. Again, I don’t write for the purpose of catharsis. And yet, catharsis does inevitably happen. It’s one of the most gorgeous, deeply spiritual aspects of the process. Even when writing sucks, as it almost always does, it’s impossible to deny that I’m healing.

Maybe the most magical part of collapsing my two obsessions—pulling my hair and writing—is that is has allowed me access to the most intimate, sticky, aching parts of myself on a daily basis. Creating a narrative for my life, assigning words to my internal murmurings, forces me to peel back the layers of masks, pride, and insecurities, exposing that part of myself that is most true. But even more than that, it forces me to translate it into a form that is accessible to others, which is essentially a process of universalizing (and humanizing) my individual experiences.

That process is, at its core, humbling. It insists that I see not my life versus yours, not me or us versus them. 48 out of 50 people are unlike me in a fundamental way: their lives aren’t dominated by a disorder like hair pulling. And yet, writing encourages me to connect to something much larger than that—that thing is not characterized by circumstance, but by story. A story that everyone, every last lonely, ashamed, terrified, self-loathing person out there, shares. Which is that we all experience the same feelings. The same fears. The same joys. My hair pulling, which used to alienate me, now connects me to humanity in a more meaningful way than ever before. All thanks to my writing.

A mentor once told me that you have to look for that one thing that you least want to write about, and then to charge into it headfirst. Writing, at least good writing, is about vulnerability. The places where we feel least comfortable, the least socially acceptable, are those that we must embrace. That’s where the heat is.

Right now, my formerly secret hair pulling life is the hallmark of my vulnerability. I plan on using this chronicle as a means of support and sharing as I charge into it headfirst.