Addressing the Myths About Trichotillomania
"When I'm pulling out my hair, I feel stuck in a trance I can't get out of," Elma Siljkovic said, describing her first experiences with a body-focused repetitive behavior. "I remember being self-conscious of a bald spot above my bangs on the first day of school and how I didn't want people to think anything was wrong with me."
Siljkovic began experiencing symptoms of trichotillomania at 10 years old, which manifested as bald spots and recurrent hair-pulling. She didn't have a name for the disorder until she was 17, when she finally found a term for her experiences through Google searching. Before, the only representation she saw was through its inclusion in the media, which focused on the myths about the disorder.
"I saw it depicted in 'The Sopranos.' Tony's daughter, Meadow, had a 'crazy' college roommate who pulled out her hair," Siljkovic explained. "Meadow and Carmela would side-eye the roommate and talk badly about her. Watching that felt like a gut punch because it was my worst fear."
And it's not just scripted dramas that poorly portray trichotillomania. TV shows like "My Strange Addiction" are guilty of it, too. One episode featured a woman named Haley, who pulled out her hair repeatedly over six years. "My Strange Addiction" gave little context on the disorder and instead shamed the subject for eating her hair follicles, and asked her to count her hair every time she pulled to establish a feeling of guilt.
"It feels disempowering and very isolating," Siljkovic explained. "I never thought I was beautiful because of this."
What is trichotillomania?
According to The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5), trichotillomania is defined as an obsessive-compulsive and related disorder, where the primary symptom is the recurrent pulling out of hair, which results in hair loss. To qualify as trichotillomania, the behavior must not be due to another medical or psychiatric condition. However, the disorder may be comorbid with other psychiatric conditions, such as depression, anxiety and obsessive-compulsive disorder (OCD).
The most common areas of hair-pulling include the scalp, eyebrows, eyelashes, pubic area, arms and legs. Many individuals may not be fully aware when they pull, referred to as becoming "automatic." Additionally, about 10 percent to 20 percent of individuals with trichotillomania engage in trichophagia, eating the follicle or hair after pulling it.
Many individuals may not be fully aware when they pull, referred to as becoming 'automatic.'
Although the causes of trichotillomania are unknown, research indicates a link to stress, anxiety, boredom, changes in hormone levels and inherited predispositions. Anxiety and arousal levels may also affect when individuals engage in hair-pulling.
Research indicates that functional and structural abnormalities in the brain may contribute to trichotillomania, specifically in the putamen, cerebellum and cortical regions. Individuals with the disorder also show excess cortical thickness. In biological studies, trichotillomania was present in adolescent girls with fewer sex hormones, who experienced higher levels of hair-pulling a week before menstruation.
Affecting self-esteem and confidence
In a 1996 study, levels of depression, frequency of hair-pulling and severity of hair loss were directly related to self-esteem. Additionally, people with trichotillomania reported failure to pursue job advancements, avoidance of intimacy and experienced social anxiety.
"Individuals who suffer from trichotillomania spend a significant amount of their time attending to their urges or masking the effects of their pulling behaviors, which usually leads to lower levels of self-esteem and confidence," said Maythal Eshaghian, a psychotherapist and anxiety and OCD specialist. "Moreover, it impacts the individual's quality of life. It takes the individual away from engaging in value-based activities, such as the things that are most important to them."
As a result, individuals may attempt to conceal their behaviors by wearing wigs, false lashes or otherwise hiding hair loss.
Due to the disorder's impact on self-esteem and confidence, individuals with trichotillomania rarely seek treatment and may think the disorder is untreatable or simply a bad habit.
Trichotillomania affects 3.5 percent of people, and that's up to as many as 10 million in the United States. So why is it classified as a rare disorder? According to Eshaghian, embarrassment and shame can limit the number of people who access treatment, which can change the overall reported numbers.
"The lack of awareness and misinformation about the disorder may lead individuals to feel alone and less likely to seek treatment," Eshaghian said. "Research indicates that at least 2 in 50 people suffer from body-focused repetitive behaviors (BRFBs), which debunks the myth that BRFBs are rare. However, many individuals suffer in silence due to feelings of shame, embarrassment and the fear of being discovered."
OCD compulsions are typically driven by intrusive thoughts, while hair-pulling is often driven by cognitive intrusions.
Despite the scope of its diagnosis, trichotillomania is commonly misdiagnosed as an obsessive-compulsive disorder due to repetitive, compulsive behaviors. However, OCD compulsions are typically driven by intrusive thoughts, while hair-pulling is often driven by cognitive intrusions. Although rates of OCD are higher in individuals with trichotillomania, there is a distinction between the two. However, hair-pulling in those cases is motivated by physical appearance instead of intrusions.
Another common misconception is that trichotillomania is a form of self-harm, but the behavior is compulsive, not punitive or similarly motivated.
Although trichotillomania has no FDA-approved treatment options, therapy is a common approach.
"The most effective treatment used for trichotillomania is a type of cognitive behavioral therapy called habit reversal training," Eshaghian explained. "Using different techniques can help the client gain more awareness of their pulling behavior, as well as learning ways to make the [hair-]pulling more difficult through stimulus control."
Aspects of habit reversal training include self-monitoring, awareness training and asking individuals to track behaviors.
Medication may also be used to manage the compulsions, but there are no specific options for body-focused repetitive behaviors. Instead, options include SSRIs and neuroleptics for people also suffering from anxiety, depression and OCD.