The condition is called trichotillomania, and is characterized by an uncontrollable urge to pull out your own hair. (Photo: Corbis/Erika Svensson)
For 20 years, from age 4 to 24, Lindsey Muller struggled with body focused repetitive disorders — nail-biting and skin-picking in early childhood, progressing to hair-pulling, or trichotillomania, in middle school. She would go on to pull out her own hair until she was a graduate student, using hair pieces to cover the bald spots on her head.
Muller is part of the estimated 4 percent of the population with trichotillomania, which the National Institutes of Health describes as “hair loss from repeated urges to pull or twist the hair until it breaks off” and the inability “to stop this behavior, even as their hair becomes thinner.” What exactly causes the condition is not known, but symptoms usually begin in adolescence (before age 17). For most people, the urge to pull out hair usually only lasts for about a year, according to the NIH — but for others, it can last much longer.
That was the case for Muller, who is now working as a mental health therapist in Los Angeles. She finally stopped pulling out her own hair in 2008, but it was a long road to get there — a journey she details in her new memoir, Life Is Trichy.
Yahoo Health asked Muller to share her insights to trichotillomania, from what it feels like to pull out a strand of hair for someone with the condition, to the lengths she had to go in styling her hair to hide her hair-pulling from others, to how she was finally able to enter recovery.
YAHOO HEALTH: In your book, you detail how you engaged in nail-biting and skin-picking as a young girl, but then stopped — and then began hair-pulling in middle school. What is it that prompted the end of one body-focused repetitive disorder, but the beginning of another?
LINDSEY MULLER: Great question. I ended the nail-biting and skin-picking around the same time, although the day it happened is not recalled. It kind of seems as though it was a gradual cessation with considerable time passing before I started the pulling. It was not a conscious decision to move from picking to pulling — it just happened. Because my pulling started as a result of such a strange experience external to myself, I never saw (at the time) that one behavior was replacing another. Now, to some extent, I see how this could be the case. This is called symptom substitution. I cannot explain what happened within my internal experiences that forced this shift because there was this outside influence (witnessing my teacher’s hair being pulled), which impacted me.
YH: Your first experience pulling your hair was not so much about gaining a physical sensation, but because you liked looking at the strands of hair. How did it progress into more than that?
LM: The shift from pulling due to a visual drive to one based upon environment may seem like it is different. In actuality, there is a sensory component to body focused repetitive behaviors that was always present in my case. The initial visual stimulation and the latter environmental-sensory stimulation, as well as the internal experience (i.e. boredom), were underlying my urges and all served as reinforcement to continue the pulling behavior. This, also, was not a conscious decision. Pulling without looking at the hair is much easier to accomplish in the ebb and flow of a given day, so naturally I likely defaulted to what was most easily accomplished by removing the visual component of looking at the strands before pulling.
YH: Your hair-pulling always occurred when you were in “low attentional demand” — basically, when you were bored. What do you do now when you are bored to keep yourself occupied?
LM: My hair-pulling definitely occurred primarily when I was under-stimulated or under-aroused. Now when I experience this state, I first recognize what I am feeling and then draw from other enjoyable, yet healthy, alternatives: taking a walk, engaging in yoga or Pilates, turning on music to sing and dance (yes, even by myself in my home), doing an art project (I have many pending art/creative projects lying around at all times), cooking or baking something for myself or someone else, going shopping, taking a bath or shower, even coloring! This list is subjective as these are things that are engaging and pleasurable for me.
‘Life Is Trichy’ author and therapist Lindsey Muller. (Photo courtesy of Lindsey Muller)
YH: Can you describe the sensation you felt when you pulled out a hair?
LM: Oh, wow! This is a typical question that non-pullers always seem to want to understand. When I pulled, I felt the farthest thing from hurt. It was this little pop when the hair follicle came free from the scalp with a simultaneous sense of relief. It’s so momentary and fleeting but at the same time so strong. I guess the closest parallel for a non-puller is that minute you get home after a long day of standing on your feet in high heels and take the heels off, or finally being able to relieve yourself in the bathroom. If that same feeling was put into the amount of time it takes to snap your fingers, and without feeling pain beforehand (like the pain of holding in a full bladder or painful, tired feet), the feel from the pull is like that.
YH: What about the urge to pull out a hair? What was that sensation like?
LM: When I had an urge to pull, I did not experience a sensation because my pulling was generally driven by my level of stimulation from my surrounding. For me, my urge was less an “urge” and more a reaction to provide relief from the feeling of boredom.
YH: You talk a lot in your book about how you strove for a “perfect” appearance — spending a significant amount of time on your hair, for instance — yet the effects of hair-pulling seem to be counter to that. Can you explain this disconnect?
LM: This is absolutely correct. As I mention in my book, I saw myself as an enigma. I was ruining exactly what meant so much to me at the time: my appearance. There was a huge disconnect between what I wanted for myself and what I was doing to myself. This is what led to so much internal conflict, distress, and self-directed dissatisfaction, sadness, and anger.
YH: Did you have to style your hair differently when you were pulling your hair?
LM: I went to great lengths to keep my disorder concealed. At the time, I was in school. I spent an extra 30 minutes to an hour each morning focusing on my hair — attaching clip-ins and covering the clips, and using gel and hairspray to draw my existing hair over bald patches, gel to smooth down short spikes as hair grew back, headbands to cover my hairline, bangs to cover over my hairline as my hair grew in, and full removable wigs of various lengths and colors. Even just putting my hair into a ponytail was a challenge. Pulling my hair back and securing it with a band would still show bald areas. I then had to maneuver hair to cover over the spots and hold in place with spray. Overall, this was not only time-consuming but very expensive. I never took the time to add the amount spent on hair styling products but I can confidently, and unfortunately, say it has cost me over $8,000 across the span of my disorder. Aside from the time and cost, so many years passed where I was unable to wear my hair how I wanted. I changed my hair color to my natural color only to make it easy to maintain and to keep me far from a hair salon, against my true desires. This led to feelings of frustration, annoyance, sadness, loss, isolation, and jealousy for my friends’ freedoms, as they had endless hair style decisions.
YH: In your book, you explain that your trichotillomania became even worse when you went from high school to college, mainly due to your new living situation (moving out of your parents’ home and into a dorm). What was it about being by yourself that worsened the problem?
LM: The transition from high school to college was challenging not because I wasn’t ready — I was very ready and always independent. The challenge came from moving into a dorm with a private bedroom, which gave me a lot of time by myself to pull. I never pulled when in the presence of others so time alone was dangerous. Dorm living also meant that I had to manage in a community bathroom, which made life hard for me. What do I do when I have to come out of the shower with wet hair? Did I remember a second towel for wrapping my wet hair? Where do I put my hair piece when I remove it in the shower so it does not get wet? The everyday non-puller would probably never have such concerns.
YH: When you were taking graduate courses, you say you felt like a phony because you were still struggling with trichotillomania while also learning how to treat people with mental conditions. Why did you feel this way?
LM: I had plenty of training, clinical skill, and education to enter into a therapy session and be viewed by my patient as a competent clinician. I could have covered my baldness, like I did everyday, and my own disorder would have never needed to enter into the therapy picture. The way I viewed myself was polar to this. I did not accept myself as a professional while still struggling with my own disorder. I thought, “How can I help others when I cannot help myself, or find help for myself? How can I treat others with trichotillomania when I, too, pull?” Further, while working on my various degrees in psychology, professors recognized my immense passion, drive, and premature knowledge of such a specialized sect of disorders. I was continuously met with compliments and astonishment as to how much I knew. I easily generated unique research questions on trichotillomania because I knew the thought process of a hair-puller. When I was asked how I knew so much, I was afraid to share the truth so I would deflect the question or answer with something like “I am fascinated by trichotillomania because very few know about this disorder.” I put my whole heart into learning and understanding as much as I could while in academia because I love learning, I desired to be an excellent professional clinician, and also because I had personal emotion invested. I would have felt less phony if I had been truthful, but I had concern that I would be judged as being too active in my behavior to help others or continue with the attainment of my degree. I was afraid that the truth about my struggle would lead to others questioning my place in the graduate program and my intentions in becoming a clinician. As a parallel, it would be like a nutritionist coaching a binge eating client on healthy, mindful eating and then binge eating right after the client leaves the office. This does not change the knowledge and training that the nutritionist possesses — but would it damage credibility?
YH: Can you describe the moment you stopped pulling? Where were you, how did you feel, why did you decide to stop doing it? Was it even a decision? Or just … all of a sudden you didn’t do it anymore?
LM: The night I arrived in Georgia after a trip to Boston for the annual trichotillomania conference was THE night. I returned from the conference feeling inspired, motivated, and overwhelmingly appalled by my realization of how difficult trichotillomania had made my life. I was choked of my freedom and choices. I reflected on how many conference attendees were completely bald, eyelash-less, and eyebrow-less. I was terrified of the worsening progression of the disorder. Keep that in mind and then add 1) feeling tired of pulling, 2) lacking pleasure/relief/gratification in doing something I had done for so long, 3) recognition that the negatives outweighed the positives of pulling, and 4) feeling guilt that I was still struggling knowing my first therapy client was in my near future. All of that fueled motivation, which was unstoppable. I said to myself, “Screw this. I’m done!” That was it. The drive to keep up momentum kept me stimulated. It was a type of high, but not too high to where I resorted to pulling.
YH: I’m sure you’ve heard about the recently published research showing an association between perfectionism and chronic hair-pulling. In your book, you talk about how at an early age, you knew you had a perfectionistic, Type A personality. How, in your experience, does perfectionism feed into hair-pulling?
LM: I am glad to see a study was conducted to specifically examine this relationship. Many hair-pullers are perfectionists. I have been a perfectionist my whole life so I can speak to the association from a personal perspective. The desire for perfectionism creates a lot of pressure and high expectations, which lends itself to a great deal of stress. Stress is stimulating, which then drives urges to pull. Stress is also draining, which can again drive urges to pull.
YH: Do you still feel tempted to pull your hair from time to time? Do you think you’ll pull again?
LM: I will not choose to pull again. I have not thought about pulling or felt an urge to pull since 2008. I do tell people that you are never recovered, always in recovery. This means that I live my life humbly, knowing I once struggled with hair-pulling for a reason. I remain cognizant of my lifestyle choices, which keeps me pull-free. I do what is right for me to keep trichotillomania a distant memory.
YH: What do you want people to know about people with conditions like trichotillomania? What do you think one of the biggest misunderstandings is?
LM: Trichotillomania is real. Trichotillomania exists. If you don’t believe it, look for information on neurobiology, or pictures of brain scans in those who pull compared to those who do not. Further, trichotillomania is a struggle. Not to minimize substance addiction, but you can remove substances from your life and find sobriety. You cannot remove your hair and be pull-free. It is always accessible and always in one’s life, so the challenge is learning to live with it without pulling. Last, the biggest thing that people without trichotillomania may not think about is the time it takes to recover from a relapse. A moment, or minutes, of weakness results in years passing to undo the damage. It’s not like you slip up, relapse, and start fresh the next day. Instead, we have to wake up every day and see the bald patches that will continue to exist day after day, month after month. But freedom is possible. I am living proof.
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