Abstract

Body-Focused Repetitive Disorders (BFRDs) are a family of conditions that are identified by uncontrollable, repetitive self-grooming behavior. BFRDs are identified in the DSM-5 under Obsessive-Compulsive and Related Conditions. Treatments are not well studied for these conditions and research tends to rely on treatments for other disorders BFRDs are falsely compared to. In this process, important components of criteria, cause, and analysis are missed in studies. A lack of communication is also prevalent in this research topic. Thus, conflicting information emerges, as well as studies that reiterate previous research when new information is needed. This analysis explores how these criteria and communication issues affect how BFRDs are studied. Interviews done with professionals in the field will be used alongside current literature on the subject to investigate the effect these problems have on the treatment and diagnosis of BFRDs.

Introduction

Self-grooming is a behavior in which one modifies or maintains their appearance without help from others. For example, combing one’s hair, clipping fingernails, and popping pimples are all ways one can partake in self-grooming. For many, these actions are controlled and done consciously. However, there are some cases in which these behaviors become uncontrollable and even obsessive. This is known as Body-Focused Repetitive Disorder (BFRD). In some literature, this is called Body-Focused Repetitive Behavior (BFRB). It is important to note that a BFRD is a condition listed in The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) with its own symptoms and criteria while a BFRB is the behavior that can, but not always, develop into a BFRD. The two are often used interchangeably in literature, which can lead to confusion or misinterpretation.

Not much is known about these types of conditions. Even the most well-known disorder in this cluster, Trichotillomania (Trich)¹, does not have much representation in research or the media. Thus, the information on how to diagnose and treat Trichotillomania, and its similar BFRDs, is insufficient. Currently, this body of disorders sits under the umbrella of Obsessive Compulsive and Related disorders in the DSM-5 due to the repetitive and obsessive nature of the condition. However, because of the lack of research, it is unclear if this is the correct placement for Body-Focused Repetitive Disorders due to other symptoms correlated with the disorders.

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¹The repetitive, uncontrolled pulling at one’s hair on one or various targeted spots of the body.

I propose that because research is not responding directly to the needs of practitioners, there is a gap in the literature on BFRDs that is directly affecting treatment and diagnosis. In this analysis, I will take various studies in which conflicting information emerges as well as interviews with professionals who specialize in these disorders to justify my claim. In these interviews, I have asked the professionals their understanding of BFRDs, their understanding of the current literature, how those two might be similar or different, and the effect that difference or similarity has on diagnosis and treatment.

Methods and Data

Professionals were screened through the following process:

• Did they have experience working with/treating the condition?
• Where they educated in a medical or medical-adjacent field?
• Was their knowledge on the condition enough to confidently make assessments in accordance to interview questions?

Some professionals were found through an organization that specializes in BFRDs. Due to a lack of resources, there were not many professionals that passed screening. Thus, some of the professionals were referred to this study through channels of communication from other professionals.

All six professionals are therapists with varying levels of education and experience. They are all to remain anonymous and will be referred to as numbers 1 to 6. All six of the interviewees were women that both treated and had a BFRD. This correlation was not sought after but instead is an outcome by a phenomenon discussed later in this paper.

Interviewee 1 also has experience working with anxiety and depression. Interviewee 1 is a Licensed Clinical Social Worker and has over 10 years of experience. Interviewee 2 also has experience working with anxiety, depression, obsessive compulsive disorder (OCD), and bipolar disorders. Interviewee 2 is a M. Ed Licensed Professional Counselor and has over 20 years of experience. Interviewee 3 also has experience working with anxiety, depression, Post-Traumatic Stress Disorder (PTSD), attention deficit hyperactivity disorder (ADHD), and OCD. Interviewee 3 is a Licensed Professional Counselor, a Licensed Mental Health Counselor, and has over 20 years of experience. Interviewee 4 also has experience working with anxiety, depression, ADHD, OCD, bipolar disorders, and trauma-related disorders. Interviewee 4 is a Certified Physical Assistant and has over 5 years of experience. Interviewee 5 also has experience working with anxiety and depression. Interviewee 5 is a Licensed Clinical Social Worker with over 20 years of experience and has authored a book about BFRD treatment. Interviewee 6 also has experience working with anxiety, depression, and substance abuse disorders. Interviewee 6 has an MS, is a Licensed Mental Health Counselor, and has over 10 years of professional experience.

The questions were formulated to cause the least amount of influence possible to the interviewees. The questions asked covered the following topics:

• Their understanding of BFRDs and how that compares to their understanding of other conditions.
• Their thoughts on current standard treatments, including Habit Reversal Therapy (HRT) and Cognitive Behavioral Therapy (CBT).
• What they used in treatment for their clients.
• Their knowledge of current literature, including professional, educational, and general media.
• Their communication with other professionals that may encounter BFRDs.

These questions then allowed the professionals to conclude how they believed current literature is affecting treatment and diagnosis.

All interviewees signed consent forms prior to being interviewed. All interviews were recorded for data collection but were not published.

BFRDs are their own condition

BFRDs are currently categorized as an Obsessive Compulsive or Related disorder, but not all professionals in this field agree with this categorization. “I definitely agree with the idea of putting body focus repetitive behaviors in their own category… I think they have more in common with each other than they do with any other disorder, and as far as all of the other ones you listed- anxiety, depression, OCD, tic disorder- often are found comorbid with body focus repetitive behaviors” [5].

Comorbidity and symptom overlap are common in mental health. Anxiety and schizophrenia both list hallucinations as a symptom, yet both are considered different conditions. Autism and ADHD have considerable overlap with regulation and sensory sensitivity, but both are still considered different neurodevelopmental disorders. Comorbidity or symptom overlap does not make two or more conditions merge into one. Instead, it indicates that it is common for the two or more conditions to develop in the same person. For example, OCD and eating disorders can be comorbid because the symptoms of OCD can develop into an obsession with food which eventually produces an eating disorder. However, these disorders are still categorized separately and treated as their own conditions in accordance with the DSM-5.

The current literature on BFRDs reject this notion and instead try to link BFRDs with another condition. Zavrou’s [17] study investigating BFRDs in Cypriot teenage dancers tried to link anxiety and stress to the development of BFRDs but was unable to. Zavrou notes that, “Several studies have been conducted to date on the incidence of BFRBs and their correlation with emotional and behavioral symptoms. ‘These studies have found skin picking present in as many as 78% of college students’ [14], ‘although damaging skin picking is believed to have an incidence of 4% among college students’ [13]” [17, pp.332]. In this quote, Zavrou cites a study done by Keuthen and perceives this study to have successfully shown a correlation between a stressful situation (college) and the development of a BFRD. However, Keuthen’s study was to find the occurrence of BFRDs in a non-clinical setting. Assessments were taken on stress and anxiety, but that was not the focus. In the results of Keuthen’s study, it is explained that the subjects who met the criteria for BFRDs tended to have more issues with body appearance than anxiety. Keuthen also notes that the 78% included those who partook in any self-grooming behaviors, while the 4% were the participants who met the criteria for BFRDs.

While proving a hypothesis incorrect can still collect data, this study added little relevant information to the literature of BFRDs as it only restated previous knowledge. Studies have already concluded that anxiety is not the sole reason for the occurrence of BFRDs. To once again try to link the two takes up limited resources on this topic and does not help practitioners obtain the information needed to better diagnose and treat BFRDs.

In another example, Redden’s study on the significance of familial medical history did not provide much new information. Previous studies had already found a correlation between having a relative with a BFRD or Substance Abuse disorder and having a BFRD. The only new information found was: “In terms of clinical measures, nothing was significantly based on the Bonferroni correction; however, those with a first-degree relative with a SUD [Substance Abuse Disorder] reported more time each day pulling or picking and greater depression symptomatology. There were also no statistically significant clinical differences between adults with and without a family member with a BFRB” [16, pp.189]. This information of little to no clinical difference could be considered less relevant compared to research on a new medication or treatment for BFRDs. When resources are limited, a handful of studies that add little relevant information takes away the time of researchers, the limited funding institutions or independent researchers receive, and the availability of subjects willing to take part in studies that medical professionals want or need.

Besides OCD and Anxiety, another disorder BFRDs are being compared to is Tic Disorders (TD). This comparison is relatively new as recent research has concluded that some of the behaviors in BFRDs can be involuntary. One example of this would be O’Connor’s study done in 2017. “BFRBs are also similar to tic and Tourette disorder and could be part of the tic disorder spectrum: both actions are semivoluntary, show similar trigger profiles, bring relief from sensations, and involve sensory stimulation; and in both disorders there is sensori-motor activation and organizational perfectionism’ [10] ‘and similar metacognitive trigger profiles’ [12]” [11, pp. 274]. Results of this study determined using the assessment for TDs better diagnosed BFRDs compared to the OCD and Related Disorders assessment.

In the same year, a study done by Sauvé [9] tried to find the neurological similarities between TDs and BFRDs. Results showed some similarities as well as made comparisons to previous studies: “…which suggests that BFRB and OCD patients may be distinct disorders with similar behavioral symptoms, while showing dissimilar P300 pattern” [9, pp. 6]. The P300 pattern is a measured brain wave associated with decision making. This means that the behavior is the same but the brain activity in deciding on that behavior is different.

Some of the interviewees agreed that BFRDs and TDs have similarities. “I do see it related to tic disorders, as well. I can see that, especially when people say there’s not an effective trigger. ‘I can be sitting on the beach reading the book feeling fine’, but they’re engaged in the behaviors.” [2]. However, the consensus was to still place BFRDs under their own category. O’Connor’s study supports that tools for TDs work better for BFRDs compared to OCD, but Sauvé’s [9] study verifies that the brain activity is dissimilar enough to categorize BFRDs on its own.

Comorbidity, not a symptom

BFRDs have been treated as a symptom of another condition rather than a comorbidity. In the example given earlier, an eating disorder would not be categorized as a symptom of OCD, but rather a possible comorbidity. However, there are instances where obsessive food habits are not enough to warrant a separate diagnosis. Then, it is said the OCD has a subtype or focus. This type of categorization could be possible for BFRDs, as those with certain diagnoses may self-groom in certain situations, but the lack of research makes this differentiation challenging.

To focus on comorbidity, interviewee 4 had a specialty in ADHD and was able to make connections of BFRDs and ADHD in her interview. “I think that ADHD is a gigantic comorbidity that we haven’t really looked into and know as much about… I find that not everybody with ADHD has a body focus[ed] repetitive behavior, but nearly all, I want to say all, but nearly all people with a body focus[ed] repetitive behavior have ADHD [or] some symptoms of ADHD” [4]. When fixating on the idea of anxiety or stress as a sole trigger for BFRDs, it can be easy to overlook other possible causes. A study done in 2018 found that, “Consistent with hypotheses, individuals with clinical BFRBs showed greater sensory sensitivity and sensory avoidance than individuals with subclinical BFRBs and healthy controls, even when controlling for comorbid diagnoses” [7, pp. 49]. In this study, clinical BFRBs are described as meeting the DSM-5 criteria for a BFRD. A subclinical BFRB is someone who has partaken in the behavior, but not to the extent for a diagnosis. Knowing that abnormal sensory processing can be common in BFRDs, it is then not surprising that ADHD could be highly comorbid with the disorder as both conditions would then have similarities in difficulties processing stimuli.

Interviewee 4 agreed that BFRDs should still be considered its own condition, and that more research would be needed to correctly identify and understand the link between the two conditions. Other interviewees mentioned ADHD and BFRDs in passing but did not find the same level of connection, possibly due to differences in specialties and volume of patients seeking specific care. This demonstrates the ability for BFRDs to exist without ADHD, further solidifying its need to be categorized separately.

Anxiety also lists skin-picking or other types of self-grooming as a symptom. Many studies try to link BFRDs to Anxiety or an Anxiety-adjacent condition, but it is not clear when self-grooming is an acute response to anxiety or is a result of a BFRD. Thus, it is important to find this distinction before continuing to force a link that may not be there. Anxiety can trigger a BFRD, but recent studies show that any strong emotion can enact a similar response. Interviewee 1 reiterates this fact in her interview, “We’re pulling our hair, or picking our skin, we’re biting our nails, we’re biting our cheeks and we cannot stop for anything, right, no matter how hard we try, we cannot stop without medical intervention… It’s typically associated with some sort of emotion, whether that’s stress and anxiety or celebration, or relief or, you know, whatever it is. These are typically associated with some sort of emotion” [1].

The link between interest and having a BFRD

All six professionals explained that they had a BFRD and having this condition made them interested in studying it. Growing up, many of them did not have access to information on BFRDs throughout school or general life. Interviewee 4 described a bad experience she had at the dermatologist when she was younger. She was misdiagnosed with Alopecia because the dermatologist did not know about Trichotillomania and other BFRDs. This misunderstanding gave interviewee 4 the passion to learn and treat BFRDs [4]. This connection between having a BFRD and being interested in studying it does not end with the participants. The interviewees spoke of various social media forums made for medical practitioners who both have BFRDs and treat it. Some of the interviewees also spoke of several conferences in which many of the participants presenting or attending had BFRDs.

Interviewee 6 mentioned one notable outlier of this phenomenon. She spoke of Dr. Sam, a woman who obtained a PhD in the BFRD field. Dr. Sam has run a data symposium where her PhD students presented their theses. These theses all concerned BFRDs, but some of them included LGBT people, while others focused on introversion and extroversion [6].

This occurrence affects the literature. Most of the professionals stated that there was little to no exposure of BFRDs in their graduate programs. Interviewee 6 spoke of her experience with universities as a resource for knowledge. She had reached out to multiple universities and offered to speak about BFRDs. Despite asking for nothing in return, none of the universities replied [6]. As someone who went through the graduate program without exposure, she wanted to educate the next generation of specialists to prepare them for counseling clients with BFRDs. Unfortunately, the cycle of no experience to general specialists will continue and instead, new therapists will only find out about these conditions by their own means, which tends to be having it or knowing someone with it.

The absence of education on BFRDs affects more than the mental health sector. “Dermatologists shame so many of their patients that they will stop going and have infections rather than be shamed for picking. They’re medical professionals, they shouldn’t be shaming their patients” [2]. It is well known that negative emotions, fear, shame, and hate, can all stem from deficient education. While it is not in best practice to shame a patient regardless, it does not help being misinformed on this condition.

In terms of public literature, there is not much. Interviewee 6 talked about an old TV show called Chicago Hope². On one of the episodes, there was a patient with Trichophagia. This is when someone with Trichotillomania ingests the hair they pull. If enough hair is ingested, it forms a trichobezoar, or hairball, that must be removed surgically. Said patient acted in outlandish ways, pretending that he lived in the Wizard of Oz and one of the nurses had to dress up like Dorothy to get him to agree to surgery [6]. The director, David E. Kelley, did not know anyone with a BFRD at the time and made a damaging depiction of this condition that many with BFRDs were outraged about. Interviewee 6 noted that later in David E. Kelley’s career, someone close to him was diagnosed with Trichotillomania. Afterward, he created a different character with a sound representation of a BFRD.

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²A Hospital Drama that ran on TV in the 1990s.

A few of the interviewees were able to mention a book or two that included BFRDs. Interviewee 5 was in the process of authoring a book during the interviewing timeframe that has since been published. The book was important to her because she had felt current treatment processes were not working for her. At one specific BFRD workshop in 2009, she remembers feeling lots of strong emotions, but was expected to simplify her emotions enough to fit them into neat boxes. This process did not work for her and gave her the idea for her book [5].

There is no issue in those with BFRDs creating solutions they need. The problem comes from those without BFRDs refusing to listen, provide resources, or help. Not everyone with a BFRD can become a therapist, hairstylist, dermatologist, or educator. Those without BFRDs, especially professionals, need to step in and help as they have for other conditions. It is not expected for someone with cancer to develop and apply treatments they researched, so it is unfair to require that with BFRDs patients.

Opening communication

Interviewee 1 explained the role medical necessity takes when resources are distributed. Health insurance uses data to label treatment procedures with different levels of medical necessity. For example, a double mastectomy for someone with breast cancer is more medically necessary than the same surgery for someone with slight back pain. Then, resources provided by the government or other institutions will be distributed according to the labels. Treatment for depression has been deemed a high level of medical necessity because people have committed suicide. BFRDs have not be deemed any level of medical necessity because the data that exists focuses on other aspects, such as anxiety or stress, rather than the BFRD itself [1]. Existing BFRD non-profits do not receive adequate funds or attention due to the missing information on the significance of BFRDs. Better communication between legislators and BFRD specialists would help in this area.

When asked about the level of communication between researchers and BFRD specialists, interviewee 4 responded: “I get most of my referrals from bfrb.org because I’m listed on their website as their, you know, one of their approved clinicians so my name at least is on their website. I [have] never been contacted about research, new research, to do research. Recently I was contacted by two women at MIT, doing some research on chronic nail biting, but it was limited to that” [4].

Interviewee 6 commented on the responses of the research currently being done, “It’s interesting too because I mean, some of the stuff that researchers are doing is very interesting from a research point of view, and just in general what makes it start, this or that, but I’ve met a lot of people [that are] like, ‘I don’t care about the theory’, you know, ‘I want techniques, give me solid techniques that just helped me stop this’ ”[6]. Using this quote in conjunction with the one from interviewee 4, the little communication between researchers and specialists is causing resources to be used on studies that are not crucial now.

Instances of noncommunication or misunderstanding between researchers exist as well. Wood’s meta-analysis on treatment for BFRDs in adolescents ruled out 37 of the original 60 studies in review due to “…not clearly containing adolescents or children within the sample (n=2), lack of a control condition (n=21), lack of psychosocial therapy (n=2), and lack of reliable assessment methodology (n=12)” [8, pp. 299]. Over half of the studies in review did not meet the given criteria. Whether the reliability of the studies or the meta-analysis is put into question, there is a missing component in BFRD research. For example, two years after Wood’s analysis, Rahman published a study on the effectiveness of Habit Reversal Therapy (HRT) on adolescents with Trichotillomania. This study was chosen because the age range in the study was 7-17 and the diagnosis criteria used was from the DSM-IV, not the DSM-5 [15]. If Rahman’s study had been published first, it would not have met the criteria for Wood’s analysis due to outdated assessment methodology. This does not mean Wood or Rahman is more correct over the other; it simply points to a lack of reliable communication that causes mismatched or irrelevant information.

Conclusion

Mental health is not an easy topic. It is not uncommon for new information to be presented that disproves old information. Sometimes studies will contradict each other and there are a lot of niche conditions or topics the general person will never hear about. However, Body-Focused Repetitive Disorders are a serious topic that should be getting attention. Currently, BFRDs are treated as a symptom or subset of other conditions, which is causing the research to miss crucial components. Thus, the diagnosis criteria and treatment tools are lacking. At the moment, there are no formal, qualified treatments for BFRDs and diagnosis tools are not reliable.

For this to change, there needs to be more prominent communication regarding BFRDs. Not every study will be reliable, but the mistakes pointed out in this paper create a snowballing effect that will continue if not intervened. Communication will allow specialists and researchers to find a middle ground of what needs to be done and what can be used. Communication will also allow BFRDs to be recognized by the public. It is not exactly known what percentage of the population is afflicted with a BFRD, but as it becomes more well-known, researchers may be able to get a clearer number. Thus, institutions may grant more resources to those studying this umbrella of conditions which would allow for clearer diagnoses and better treatment options.

Future research

Because the literature on BFRDs is so scarce, there are many directions future research could go. All six of the interviewees mentioned research they hoped to see. Interviewee 6 specifically mentioned age and how difficult it could be reversing the obsessive grooming habits attached to BFRDs. Interviewee 4 wanted more research on ADHD and BFRDs. Interviewee 1 wanted to see if there was a relation between personality types and BFRDs. These are all studies possible for the future, with this analysis helping to further the ongoing dialogue. I would like to see studies done on the self-regulating component of BFRDs and if the presence of Gender Dysphoria can aggravate BFRD symptoms.

Acknowledgements

I would like to thank my partner who supported me on this journey of independent research, as well as all my friends who stood by my side when I doubted myself. I would like to thank my parents for supporting me financially, which has given me the opportunity to take on this endeavor.

Thank you to all the professors and honors faculty that have pushed me to do my best, step out of my comfort zone, and provided me with such an opportunity. Without their support, from the Mathematics Department and Honors advisors especially, I would not have accomplished an undertaking of this magnitude.

Finally, a special thanks to those who took part in my interviews. Without these amazing people, this paper would not exist.

Contacts: xcohen@howardcc.edu

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