Trichotillomania (TTM) isn’t something I learned about in a classroom or a textbook. I learned about it at home. The Diagnostic and Statistical Manual of Mental Disorders, 4th edition (Text Revision; DSM-IV-TR) describes TTM as an impulse control disorder in which a person has an irresistible urge to pull out scalp hair, eyebrows, eyelashes, pubic hair, facial hair, or body hair. (See the box below.)
DSM criteria for TTM
According to the DSM-IV-TR, five key criteria must be present to diagnose TTM:
However, some experts now classify TTM as a body-focused repetitive disorder, defined as a repetitive self-grooming behavior in which pulling, picking, biting, or scraping of the hair, skin or nails results in damage to the body. TTM often coexists with other psychological disorders, such as obsessive-compulsive disorder (OCD), mood disorders, anxiety disorders, eating disorders, personality disorders, or substance use disorders. Some researchers believe TTM resembles OCD in that both are associated with urges to perform unwanted repetitive behavior. Unlike with OCD, though, TTM usually isn’t driven by recurrent intrusive thoughts.
TTM affects an estimated 2.5 million people in the United States. One of them is a member of my family. We’ll call her Amelia. Her symptoms emerged in 1983, at age 10. Back then, the Internet wasn’t around and little information about TTM was available. At first, the family attributed her hair loss to the stress of having a demanding teacher and her longing for a Cabbage Patch Kid—highly sought after at the time. She knew how hard it was to get one of those dolls; she’d heard of fights breaking out among customers over the last dolls on the shelves. Her anxiety over the possibility she wouldn’t get a doll caused her great stress and worsened her hair loss. Then one day Amelia told us she was pulling out her hair and didn’t know what was compelling her to do it. Over the next 2 years, we watched helplessly as her symptoms worsened. In search of answers, the family took her to numerous doctors, who drew a lot of blood and performed scalp biopsies—but they couldn’t give us an explanation. Then, while reading everything we could find on hair loss, we happened upon TLC—the Trichotillomania Learning Center in Santa Cruz, California. We wrote a letter to TLC asking for help; they responded with information that started us our journey through the learning process and the quest to find treatment for Amelia. TLC gave us the answers we’d been seeking and a way for our family to contact other sufferers. The organization also suggested a medication available only in England. By then, Amelia was age 12. But after our family went through the lengthy process to obtain the medication, she said she was afraid to take it. So began other medication trials and therapy—not all of them successful. We spent thousands of dollars on wigs and hats; when Amelia wasn’t wearing these, she sculpted her hair with maximum-hold hair spray to try to hide areas where her hair was sparse from pulling. She couldn’t attend slumber parties with friends for fear her secret would be revealed. Once people suspected she was wearing a wig, they ridiculed her and tried pull it off. To further conceal her TTM, she began wearing a hat and glued it to her remaining hair with hair spray. Working to hide her TTM from others became Amelia’s full-time job. She feigned an air of confidence so others would think the teasing and humiliation weren’t getting to her. But inside she seethed with pain, anger, and self-hatred. As she got older and her stressors changed to work and relationships, her TTM continued and further eroded her self-worth. She experienced severe anxiety, OCD, and depression. TTM especially affected her relationships with men. With each new relationship came a new test: She would quiz each man in a roundabout way to learn how he might feel about her “problem,” fearing he would reject her because of it. Today, 28 years later, she is married but still struggles with TTM and the emotional scars it has caused.
What causes TTM?
The cause of TTM remains unknown. Some researchers believe it stems from abnormalities in the brain chemical serotonin. Magnetic resonance imaging studies have found that some TTM sufferers have structural abnormalities of the lentiform nucleus, a part of the corpus striatum that includes the putamen and globus pallidus in the basal ganglia.
TTM typically begins in late childhood or early adolescence; average age at onset is 13. TTM affects girls and boys equally, but in adults, more females have the disorder. During adolescence, fear of ridicule by friends and family may hinder development of self-esteem and a normal body image in a person with TTM, impairing the ability to form healthy relationships. Without treatment, TTM may persist lifelong, with symptoms waxing and waning.
What it feels like
Stress seems to play a role in hair pulling; in low-stress environments, symptoms may diminish or stop temporarily, returning when stress increases. Some TTM sufferers feel a strong sense of anxiety or urgency before pulling the hair and relief or gratification afterward, perhaps followed by feelings of guilt and anxiety over inability to control the pulling. They tend to pull out their hair in private, during times of stress or conversely, when relaxed and distracted, as when reading, watching TV, or in the bathroom. Some sufferers are aware they’re pulling their hair, while others aren’t. Some people with TTM experience the urge to pull out other people’s hair and may look for opportunities to do this secretively and stealthily. Or they may pull hair from pets and dolls or may pull fibers from carpets or sweaters. After pulling the hair, some sufferers run the hair over their lips, chew on the root, or even eat the hair. In rare cases, consumed hair forms a large hairball (trichobezoar) in the stomach or elsewhere in the GI tract, which can lead to an obstruction or perforation and, possibly, death. Because the body can’t digest hair, this condition usually requires surgery. Hair pulling may lead to bald patches visible to others, as well as infection of the hair follicle, which may cause scarring and permanent hair loss. As with Amelia, psychological effects may include low self-esteem, shame, and embarrassment, which can lead to fear of intimacy and avoidance of social situations. Children with TTM may refuse to go to school out of fear they’ll be teased by classmates; adults may experience occupational impairment. Sufferers may spend much time and energy trying to conceal the problem and may wear false eyelashes, wigs, hats, or scarves; or they may style their hair to conceal bald areas.
TTM is treated mainly with medication and behavior therapy, including a type of cognitive behavioral training (CBT) called habit reversal training (HRT). In HRT, individuals learn to recognize when they feel like pulling their hair, and then learn how to redirect this urge. HRT may involve keeping a journal, with patients asked to keep track of how they were feeling, where they were, and what they were doing when the hair-pulling event occurred. This helps them recognize situations that lead to hair pulling so they can learn to avoid them. Medications used to treat TTM include those used for OCD, such as clomipramine (a tricyclic antidepressant) and selective serotonin reuptake inhibitors—for instance, sertraline and fluvoxamine. New research shows that sufferers who received a combination of CBT and SSRI therapy had greater symptom relief and higher response rates than those who received monotherapy. Although underreporting makes it hard to know exactly how many people have TTM, with increased awareness, continuing research, and ongoing investigation of treatment efficacy, more TTM cases are being diagnosed. People with TTM need to know they’re not alone and don’t need to suffer in silence.
The nurse’s role
When caring for patients with TTM, develop a trusting relationship and make an effort to understand their emotional, sociological, and psychological status. Listen closely and nonjudgmentally as they express themselves. Encourage them to seek treatment. You may want to explore aspects of the patient’s life relating to recent experiences, current stressors, and past traumas. Recognize that current stressors may be TTM triggers. Suggest the patient self-monitor hair pulling over the course of a week to identify its frequency, triggers, and reducers. Teach self-care measures, such as keeping the hands busy during idle periods with crafts, using a squeeze ball, clenching the fists, or writing in a journal. As appropriate, suggest the patient meditate, use relaxation techniques, and get in touch with his or her emotions. Recommend wearing a hairnet at home, wearing thin gloves, sharing with other sufferers online, joining a support group, undergoing psychotherapy, and asking a trusted family member to give the patient a sign when he or she unconsciously pulls or twirls the hair. Be sure to provide accurate information about TTM, answer patients’ questions, and tell them about TLC. Inform them that the TLC website is a great place for support and information on a multitude of topics, including information for teen sufferers, treatment providers, therapies, resources for family and friends and cosmetologists and hair salons familiar with TTM. (For expert consensus guidelines on treatment, visit http://www.trich.org/dnld/ExpertGuidelines_000.pdf.) Teach the patient’s family about TTM and answer questions. Be aware that they may feel helpless and frustrated. Tell them TTM is a real disorder recognized by the DSM-IV-TR; that they didn’t cause their loved one’s TTM and they can’t stop it. Encourage them to join a support group. Above all, emphasize the need to be caring and supportive and to take cues from the loved one as to what would be of most help in decreasing the pulling behaviors. TTM can affect every aspect of life—from how sufferers feel about themselves to how they spend their time and interact with others. Yet they can lead comparatively normal lives. Amelia is living proof of that. At age 35, after three decades of living with the disorder and blaming herself for being unable to control it, she recently told me she’s finally able to say aloud that having TTM isn’t her fault. She has come a long way in accepting herself and says she will no longer put “Stop pulling” on her list of New Year’s resolutions. Our family is proud of her. Jamie Anderson is a RN Case Manager at Champlain Valley Physician’s Hospital Medical Center in Plattsburgh, New York. Selected references American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, 4th edition Text Revision. Washington, D.C.: Author; 2000. Chamberlain SR, Menzies LA, Fineberg NA, et al. Grey matter abnormalities in trichotillomania: morphometric magnetic resonance imaging study. Br J Psychiatry. 2008 Sep;193(3):216-21. Chamberlain SR, Menzies LA, Sahakian BJ, Fineberg NA. Lifting the veil on trichotillomania. Am J Psychiatry. 2007 Apr 1;164(4):568-72. Duke DC, Keeley ML, Geffken GR, Storch E. Trichotillomania: a current review. Clin Psychol Rev. 2010 Mar;30(2):181-93. Fennessy J, Crotty CP. Trichotillomania. Dermatol Nurs. 2008 Feb;20(1):63. Giarell E. Spiraling out of control: one case of pathologic anxiety as a response to a genetic risk of cancer. Cancer Nurs. 1999;22(5):327-39. Bloch MH, Landeros-Weisenberger AL, Dombrowski P, et al. Systematic review: pharmacological and behavioral treatment for trichotillomania. Biolog Psychiatry. 2007;62:839-46. Scientific Advisory Board of the Trichotillomania Learning Center. Expert Consensus Treatment Guidelines for Trichotillomania, Skin Picking, and Other Body-Focused Repetitive Behaviors. 2011. http://trich.org/dnld/ExpertGuidelines_000.pdf. Accessed November 16, 2011. Trichotillomania Learning Center. http://trich.org/about/for-professionals.html. Accessed November 16, 2011.