What to call IT

In the 80’s I read the term Trichotillomania (TTM) for the first time in an abstract on a microfiche. It hit a nerve and felt painful. Yes, I felt relieved that someone actually wrote about this disorder. This proved that I  was neither the first nor the only one engaging in some unusual hair pulling behavior. Labeling and diagnosing can be liberating, when you finally hear that there is a name for something you are experiencing. However, to this day I don’t really like the sound and sight of it.  patient groups expressed When the term was accepted into the IC-D and DSM classification systems,  patient groups saw inherent problems in the name because of its potentially stigmatizing effect containing the word ‘mania’ which translates into madness, insanity and craziness.

Diagnoses of disorders are not ever really good news and their names are simply not uplifting. However I think that the term Trichotillomania has a potential to contribute to the already low self-esteem of a person engaging in the behavior and to create distance between people who suffer from it and their social contacts. Many have experienced that this foreign row of letters is never understood the first time someone hears it, which complicates the communication about such a delicate topic in that the messenger has to first hold a mini-lecture. The term derives from the Greek language: hair – thrix, to pull – tillein and mania. With great respect to François Henri Hallopeau who coined it, I much more prefer word pairs, triplets and quadruplets from each respective language describing the behavior in a more neutral way. For example in English hair pulling disorder sounds softer to me, more matter of fact and definitely not so psycho. My favorite is the non-judgmental and inclusive quadruplet a genius mind I couldn’t find online came up with: 

Body-Focused Repetitive Behavior

It may take a while to let this one roll off your tongue and to remember its abbreviation BFRB but I find it so worth it. I have  started to use Hair-Focused Repetitive Behavior when my communication specifically refers to hair.

BFRBs  except the ones relating to the mouth and fingers and to swallowing, sucking, cracking and eating can also be called and understood as pathological grooming or grooming disorders. 

Here is an Overview of Body-Focused Repetitive Behaviors, Status May 2024

Ears
Cleaning the ears repetitively to remove ear wax

Eyes
Cleaning the eyes repetitively with one’s fingers to remove mucus or excretions

Hair
Trichodaknomania, biting one’s own hair
Trichocryptomania, repetitively breaking the hair off above the scalp
Trichophagia – Trichophagy, eating one’s hair
Trichorrexomania, cutting the hair with one’s finger nails
Trichoteiromania, rubbing the head hair also to soothe an itching sensation, results in very short stubbly hair
Trichotemnomania, repetitively cutting one’s hair or split ends off
Trichotillomania, repetitively pulling one’s own hair out

Nails
Onychophagia – Onychophagy, nail biting
Onychotillomania, nail picking

Nose
Mucophagy, eating boogers
Rhinotillexomania, compulsive nose picking

Skin
Dermatillomania, skin-picking, scratching
Dermatophagia – Dermatophagy eating of one’s own skin

Mouth
Morsicatio buccarum, cheek biting
Morsicatio labiorum, lip biting
Morsicatio lingua rum, tongue biting

Teeth
Bruxism, teeth grinding

Fingers
Finger sucking
Finger and knuckle cracking

An Experiment for people with TTM – Try out what works for you
Say the following statements out loud and decide which one feels the best to you.

A: I have or had trichotillomania.
B: I have or had trich.
C: I have or had hair pulling disorder.
D: I engage or have engaged in hair-focused repetitive behaviors.

Since the end of the 19th century, in the course of recognizing trichotillomania as a mental illness, there have been efforts and decisions to give it a place among the known mental illnesses. There are two classification systems in use around the world to code and categorize diseases for researchers, doctors and health insurance companies:

ICD – International Statistical Classification of Diseases and Related Health Problems

The ICD is a collection of all diseases by the WHO, World Health Organization. Each disease receives a code, which serves to facilitate the management of bills, prescriptions, and reimbursements and to collect statistical data worldwide while using the same codes and descriptions. The ICD-10 version from 2019 was replaced on January 1st, 2022 by the ICD-11.  In the older version, Trichotillomania is the only body-focused repetitive behavior included in chapter 5 Disorders of Adult Personality and Behavior under Impulse Disorders right after pathological gambling, fire-setting (pyromania) and stealing (kleptomania).

In the ICD-11 Trichotillomania, Excoriation disorder (Dermatillomania) and other body-focused repetitive behaviors are be listed under Body-focused repetitive behavior disorders.

DSM – Diagnostic and Statistical Manual of Mental Disorders

The American Psychiatric Association, APA generated manual includes only mental disorders. In 1987 Trichotillomania was included in the 3rd revised edition, DSM-III-R. In the DSM-5 published in 2013,  Trichotillomania was listed under Obsessive-compulsive and Related Disorders, along with obsessive-compulsive disorder (OCD), excoriation disorder, body dysmorphic disorder and hoarding disorder.

Signs of the Disorder

There are many ways how people pull on their hair. Occasionally or even daily touching of one’s hair like twirling it is not a disorder as long as this possibly self-soothing or nervous habit can be easily stopped at any time and the action does not cause suffering.

Trichotillomania patients engage in hair-related repetitive behavior, with an intensity and frequency, which are in direct relation to emotional, mental, physical and social distress.

The frequency how often a person pulls varies widely from once in a while to several hours daily. The intensity of the pulling can vary from one hair to a bundle, from an intense grabbing and tearing to a soft gliding along one single hair over and over with one’s fingers until it gets looser and leaves its follicle by itself.

On an emotional level, those affected feel fear of being or becoming crazy and being excluded from their social fabric, guilt because they do this to themselves, waste time, change their appearance and shame because of embarrassment.

On the mental level there can be negative thought loops, an attempt to find a solution through intelligence.

On a physical level, there can be bald spots or areas, low overall hair volume and skin irritation.

Social suffering arises from self-inflicted isolation, the experience of exclusion, conflicts with relatives and loved ones and impaired time management, loss of time, lack of punctuality.

Everyone affected has their own set of symptoms. Consequently, since Hair Pulling behavior is so divers, the disorder is described as highly heterogenous.

First of all, there are different places where hair can be pulled out: scalp hair, eyelashes, eyebrows, beard hair, body hair and pubic hair. The behavior can be limited to only a small spot, for example on the scalp, or it can include several types of hair and areas.

Then there are individual methods, for example using the thumb and index finger of one or both hands, the finger nails,  tweezers or scissors or one’s teeth.

Then there are differences in the phase before and after the pulling out. For example, a hair or several hairs are pulled out abruptly or a preceding phase can involve looking or feeling for specific hairs. The spectrum of possibilities of what happens to a pulled hair includes simply dropping it, examining the hair, an intentional collecting and disposal procedure or putting the whole hair or parts of it like the root or the shaft near the lips and mouth and either just experience the sensation of hair and mouth touching or chewing and swallowing the hair. 

All BFRBs have automatic and focused behavior. This means the behavior is either unconscious, for example takes place while the person is engaged in certain activities for example watching a movie, or in trance like state or while sleeping or it is intentional and conscious.

Body-Focused Repetitive Behaviors are complex psychological disorders most likely caused by a combination of genetic and environmental factors.

Research on the influence of genetics shows that the likelihood to engage in a BFRB is higher if a close relative is also affected.
Trichotillomania could be a learned behavior and/or a genetic disposition, for example when a child sees its mother pulling out her hair under stress.
Epigenetics in psychology is a vast field and promises to show insightful connections between genetics and environment and behavior reaching beyond the nature-nurture model. One interesting question here is if behavior caused by environmental conditions can be inherited

In general, the course of the disorder is in relation to the onset. A full recovery is more likely with very young children. Most patients develop Trichotillomania between 9 and 13 years parallel to puberty. This hints at the important role hormonal changes and imbalances may play.

Regarding the prevalence of Trichotillomania there seems to be a discrepancy between clinical studies, which show a high female-to-male ratio of 8:1 to 10:1 and epidemiological studies with a much lower female-to-male ratio from 2:1 to 1:1.
Prevalence, gender correlates, and co-morbidity of trichotillomania. Jon E. Grant, Darin D. Dougherty, Samuel R. Chamberlain, Psychiatry Research, Volume 288, June 2020, 112948, Page1-2

The relationship between the menstrual cycle and hair pulling is especially interesting to me and I would like to do more research on that at another time. So far, I found two studies comparing the intensity of hair pulling behavior in relation to the menstrual cycle.*

BFRBs have original and reoccurring causes.

An original cause for a person who pulls out her eyelashes could be that as a child she learned that when someone finds an eyelash, which has fallen out, he or she could blow on it and make a wish. Perhaps she really wished for something important and since it is rare to find an eyelash, she decided to pull one out. Then she did it again and perhaps the sensory experience felt interesting or she felt more in control of her life, and she explored further and repeated.

An original cause can be one straggly hair, which sticks out or one hair, which naturally fell out, gets picked up and examined.

Some people with BFRBs don’t remember the first time, especially if it was during early childhood or the behavior occurred more automatic than focused and other remember that key moment in great detail.

Trauma, shock, experiences of abuse, neglect or high stress can also cause a person in a short or long period of time after the experience to engage in hair pulling. The reason why an individual starts to pull his hair, bites her nails, becomes depressed or does not react with a psychological symptom at all to a trauma, is embedded in the individual’s psychology.

Reoccurring causes are also called triggers. Here are different types of triggers with a few examples.

Visual unwanted, dry, split or gray hair, which doesn’t feel it belongs. Images of scalp, hair, hair pulling 

Kinesthetic the texture, the surface and overall feel of a specific hair.

Auditory the crackling sound of dry hair or the sounds one hears when brushing, combing, stroking the hair. Hearing about hair, hair pulling descriptions.

Physiological a hormonal change or nervousness caused by sugar or caffeine.

Emotional any emotion, which is either unpleasant or exciting but is difficult to hold or express.

Mental the many thoughts, which will prompt the behavior. For example, I want my hairs to feel all the same. I can’t handle this situation right now. I need to calm myself.

Habitual routines, environments like a special room or location, which have become intertwined with the behavior.

*In 2018 Jon E. Grant and Samuel R. Chamberlain published Salivary sex hormones in adolescent females with trichotillomania. Eleven persons with Trichotillomania after their first period and without hormonal contraception provided saliver samples for the analysis of the estradiol, progesterone and testosterone levels. Lower levels of progesterone were associated with more severe symptoms, and lower levels of all hormones were associated with poorer overall function.

In 1997, Dr. Nancy Keuthen et al. found in the study The relationship of menstrual cycle and pregnancy to compulsive hairpulling, that 53.3% of the 45 test persons had their urge to pull hair worsened in the premenstrual phase and decreased with the onset of the period.

Measures, Interventions | Therapy | Medication | Self-Help | Areas of Life

These five categories are listed here in a sequence, which might reflect the actions of a person noticing the disorder, be it the parent of a child or an adult with hair pulling behaviors. First they will try to somehow stop it.

Measures and interventions are the infinite ways people with BFRBs as well as therapists, researchers, family and friends came up with to stop, reduce and distract from the urge and behavior. Some measures are similar to or are part of forms of therapy. Some require complex life style adaptations in different Areas of Life.

Here are some time-tested practical measures inspired by the BFRB community especially for Hair Pulling Disorder. The ones with an *  I would like to find out more about with my online survey.

Fiddle Toys, stress balls, rings, bracelets
Focusing the mind on an activity
Hair, Head & Hand Covers
* Hair & Head Washing
Occupying hands with knitting, baking, drawing
* Shaving the hair

There are many types of therapy for mental and psychological health such as counseling, family therapy, psychoanalysis, biodynamic therapy, and talking therapy. Ultimately, people find the therapy that resonates with them. In regards to body-focused repetitive behaviors Cognitive Behavior Therapy, CBT stands out as the currently most recommended and successful psychotherapy for Trichotillomania. It also proves to be more helpful than medication. Cognitive Behavior Therapy is a type of talking therapy, where a person learns about the connections between thinking, feeling and acting and how to change unwanted behaviors by managing their thoughts and feelings.

Part of CBT can be a specific approach called Habit Reversal Training, HRT, which consists of awareness training, competing response training and social support. A classic example for competing response training is making fists and interlocking arms when the hair pulling urge arises. The element of competing response training is of special interest to me regarding Study 2, in that caring motions and actions for hair also involve opposite movements.

Dialectical Behavior Therapy is another type of learning therapy and consists of mindfulness, emotion regulation, distress tolerance and interpersonal effectiveness. The existing research on the positive effects of implementing the concept of mindfulness into therapy has paved the way for me developing a mindfulness-based hair care treatment for Study 2.

The decision whether or not to try medication and if yes, which type is highly dependent on the individual’s overall health. For example it is important to consider whether the Trichotillomania patient also suffers from depression, anxiety or has other physical and emotional challenges like insomnia, mood swings or experiences high levels of stress. Research has shown that medication can be helpful in combination with CBT. For some people the antidepressant SSRI, selective serotonin reuptake inhibitors, helps to diminish the urge.

Self-Help plays a big role in that many Trichotillomania patients know in general so much more about the disorder than their family, teachers or therapists. They become experts of their individual expression of hair pulling and helping themselves might be preferred to explaining and educating when they are the ones needing more answers.
Whatever helps the Self in managing and overcoming a disorder is right: be it journaling, learning how to analyze dreams, participating in self-finding workshops, practicing Yoga, meditation or so much more.
Self-Help is often the only choice when therapy is not available or too costly.
Organized Self-Help Groups can be a tremendous source of connection, emotional support and networking.

Examining these Areas of Life for potential stress and imbalances and making adaptations may or may not influence the hair pulling urge and intensity.

Health

• Considering Drugs & Medication
• Managing Health Challenges in addition to Hair Pulling Disorder
• The Role of the Menstrual Cycle
• Physical Activity
• Rest & Relaxation

Nutrition

• Daily Diet
• Supplementation

Study & Work 

• Daily Routines
• Study and Work Environment
• Evaluating Time & Task Management
• Financial Situation

Personal Life

• Self
• Location
• Cultural, political, religious, social identity
• Family
• Intimate Partners
• Friends