The UpTic

Living With BFRBs: Support, Treatment & Their Connection to Tourette’s

• New Jersey Center for Tourette Syndrome and Associated Disorders • Season 2 • Episode 35

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In this episode, I had the honor of sitting down with Dr. Marla Deibler, a licensed clinical psychologist and expert in behavioral and cognitive psychology, to explore a topic that's not only often misunderstood but deeply important: Body-Focused Repetitive Behaviors (BFRBs). These include things like hair pulling, skin picking, and nail biting — behaviors that are frequently dismissed or minimized, but that can significantly impact a person’s emotional and physical well-being. Dr. Deibler brings warmth, clarity, and a wealth of clinical knowledge to help us better understand what BFRBs really are, how they function, and the crucial connection they share with Tourette syndrome, OCD, ADHD, and anxiety. This conversation touches on the science, the stigma, and the strategies for support. 

Marla Deibler, PsyD, ABPP is a Licensed Clinical Psychologist, Board-Certified in Behavioral and Cognitive Psychology, and CEO of The Center for Emotional Health of Greater Philadelphia. She is a nationally recognized expert in anxiety disorders and obsessive-compulsive and related disorders. Dr. Deibler currently serves as faculty member of Behavior Therapy Training Institute (BTTI) of the International OCD Foundation (IOCDF), President of the Board of Directors of OCD New Jersey (OCDNJ), the NJ affiliate of the International OCD Foundation, Consultant for the New Jersey Center for Tourette Syndrome and Associated Disorders, Visiting Clinical Supervisor at the Rutgers University Psychological Services Clinic, and as a member of the Executive Council for the Association for Contextual Behavioral Sciences (ACBS)OCD Special Interest Group.

Episode Highlights:

[0:40] Welcoming Dr. Marla Deibler and kicking things off with the basics of BFRBs.
[1:53] Breaking down what qualifies as a BFRB — it’s more common than you think.
[2:10] Exploring the link between BFRBs, Tourette syndrome, OCD, ADHD, and anxiety.
[3:02] How genetics, behavior, and environment all play a role.
[6:18] Tackling the stigma and shame that often surround BFRBs.
[6:53] Why CBIT and Habit Reversal Therapy work — and how we adapt them.
[9:03] A look into diagnostic assessments and whole-person treatment planning.
[11:16] Addressing shame through compassion and community-based support.
[21:41] Comparing how BFRBs manifest differently in children vs. adults.
[25:15] Tips for parents — how to approach these behaviors with sensitivity.
[27:09] Where we are with research, treatment, and what needs to improve.
[30:45] Medication, brain science, and how BFRBs differ from tics.
[35:39] Nonprofit resources and communities that offer specialized support.
[37:01] Final words of encouragement — you’re not alone, and help is out there.

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Marla Diebler:

But there's a certain amount of isolation that people experience when they have bfrbs, and a certain amount of secrecy and hiding or camouflaging behaviors of the physical effects of bfrbs, and so oftentimes they feel like they're the only people that do this thing. And so connection with other people who have lived experiences to help sort of normalize the experience. So we typically will set them up with those kinds of experiences, whether it's a support group or other kinds of in person experiences where they can have conversations and get to know other people who struggle with similar behaviors.

Michael Leopold:

Welcome to the uptick brought to you by The New Jersey Center for Tourette syndrome and associated disorders, empowering children and adults through education, advocacy and research, by sharing The stories and experiences relevant to the TS community. You Hello and thank you for joining us here on the uptick. I'm your host, Michael Leopold, and our guest today is Dr Marla diepler. She is a licensed clinical psychologist, board certified in behavioral and cognitive psychology and the CEO of the Center for emotional health in Greater Philadelphia. She's also the co author of the book, the bfrb recovery workbook, effective recovery from hair pulling, skin picking, nail biting and other body focused repetitive behaviors. Dr diebler has really developed an expertise on body focused repetitive behaviors, or bfrbs, which will be a big focus in our discussion today. Dr D Bleu, it's wonderful having you on the uptick. How is your day going? It's

Marla Diebler:

going well. Thank you so much for having me. Absolutely. I want to get

Michael Leopold:

started with the basics. Can you explain to our listeners, what are bfrbs? So

Marla Diebler:

bfrbs Are any kind of self grooming behavior that unintentionally causes harm to the body. So there are things like hair pulling, skin, picking, nail biting, biting your lips, biting your cheeks, behaviors like that.

Michael Leopold:

And what's the relevance of it within our Tourette community, well,

Marla Diebler:

there's a high CO occurrence between tic disorders and bfrbs, as well as the other disorders that we often see co occur with Tourette's. So we see bfrbs also a lot in the OCD community and in those who have ADHD and anxiety disorders. So we see all of these occur more commonly together. What

Michael Leopold:

do we think is sort of the cause of it?

Marla Diebler:

We don't really know. The research into the etiology of bfrbs is really still kind of in its infancy, and with, like with a lot of psychiatric disorders, it's probably multifaceted. So we do believe that there's a genetic component to it, but there are probably also other factors as well, like environmental factors. There's certainly a behavioral learning component to it, because it becomes sort of a self reinforcing behavior and and other factors as well. So

Michael Leopold:

makes sense. I mean, do we have any data around how prevalent it is in the general population and also within the Tourette community?

Marla Diebler:

I haven't seen any specifically in the Tourette community, but in the general population, about 2% of people struggle with clinically significant trichotillomania, which is hair pulling disorder. About three to 5% of the population struggle with skin picking, or what we call excoriation disorder, and then other kinds of body focused, repetitive behaviors like nail biting, like biting your lips and cheeks, those are even more prevalent than that, maybe even upwards of 30% of the population, and it sounds

Michael Leopold:

like one of the triggers for this is like anxiety, and there may be others as well. But I'm wondering, you know, with ticks, a number of people feel a sort of urge before the tick comes on to kind of do that that tick. Is that something that we see in in this as well?

Marla Diebler:

Yeah, so a lot of people with bfrbs do experience what one might call a pre monetary urge, right, this rising sense of the tension or discomfort prior to carrying out the behavior and then receiving, you know, the feeling of sort of relief or gratification in some way after carrying out the behavior. However, not everyone experiences that, and it's not a requirement in terms of like diagnostic criteria, everyone experiences bfrbs a little bit differently, and they're really considered to be very heterogeneous in that they're very different in terms of how people experience them themselves from moment to moment, or one bfrb to another bfrb, but also across individuals, they serve different functions for different people. And it's a little bit more complicated in terms of what's going on and why it's happening. It's

Michael Leopold:

interesting too, because same thing with ticks. I mean, not everyone gets a pre monetary urge, like a lot of children are, don't experience it, or maybe aren't aware of it or something. But even adults, some just, you just kind of tick. And there could be a. Are things at play going on we just don't understand. You know, one of the things I understand with bfrbs is that there's, there's high level of stigma and sort of a dismissive attitude around it. And I'm wondering if you could speak a little bit about that, and you know what that is, has been like?

Marla Diebler:

Yeah, there's really quite a bit of shame and embarrassment that people with bfrbs experience, because oftentimes they report a lot of those kinds of feelings around the idea that they're unintentionally causing harms to themselves, right? This is not intentional self injurious behavior. This is behavior that they would like to stop, that they have difficulty stopping, right? This is not a behavior that they want to do, even though it is goal directed, even though they do it purposefully, although sometimes it's outside of their awareness, it is shameful, oftentimes to an individual, to be the one that causes that kind of harm to themselves, not just physically, but also emotionally, because it's difficult to live with the bfrb and have that kind of struggle. So there's usually a lot of shame and embarrassment around the disorder, and there's a lot of stigma associated with the physical effects of the disorder. So having bald patches, having skin lesions and other kinds of like physical sequelae of the behaviors as well, leads to a lot of secrecy and embarrassment.

Michael Leopold:

I can imagine that. I mean, it also encompasses things like, like nail biting and stuff. And if you're an adult like that, you know, people say, Oh, how come you didn't ditch that habit when you were a kid like I could, I could definitely see that leading to a lot of, like, hiding behaviors and some some shame around that. And you know, it's unfortunate, because then that just prevents, it becomes a barrier to getting treated, to getting diagnosed, and things like that. And, you know, with regarding, actually, on that note, regarding the treatment, I think people may be interested to hear that CBD is is an effective technique, not only for ticks, but also for bfrbs. Want to share a little bit more about that.

Marla Diebler:

Yes, so So c bit, or comprehensive behavioral intervention for ticks, is essentially a repackaged treatment that we refer to in other areas of practice as HRT or Habit Reversal therapy. And Habit Reversal therapy is one of the evidence based treatments used for body focused, repetitive behaviors. So the main components of awareness training of stimulus control, right, like manipulating the environment such that it's less likely to provoke the behavior and then giving people competing responses to practice and utilize when they notice that sense of discomfort or to interrupt the behavior as it begins, right? This is what we practice with them, although, like I said, bfrbs are more complicated, so there's a more thorough functional analysis that's necessary, and we need to really evaluate the other components too that lead to the behavior, like thoughts, like emotions, like physical sensations. That's a little bit more complex in terms of the kind of tools that they might need to be equipped with to effectively intervene and control the behavior to the extent that they would like. I

Michael Leopold:

know that with CBIT for ticks, a lot of the focus is on or some of it is beyond the competing responses. Is just on understanding when you're ticking, what situations, what's the feeling like? There's also a big emphasis on breathing and relaxation as as forms of coping. Are those also relevant pieces for, you know, managing this?

Marla Diebler:

Yes, they can be. Everyone is different in terms of what serves as an antecedent to the behavior and what kinds of skills they need because of whatever those individualized antecedents might be experienced as. But yeah, we do certainly teach those kinds of skills for individuals with bfrbs. One

Michael Leopold:

thing you mentioned to me when we last met was that you really emphasize holistic treatment, you know, not just rushing into CBD or, like, making assumptions, really. And you said it again here too, looking at the whole person, I wonder if you could speak some more to that. Like, let's suppose I go into, like, I have, I have a bfrb, and I go to a session with you. What can I expect? What would the diagnostics be like? The kind of assessment you do? What would it look like? So

Marla Diebler:

the first thing that we do is really to do what we call a biopsychosocial assessment, which is really to just have a really thorough clinical interview to understand the biological aspects, the psychological aspects and the social aspects of someone's life in the context of the difficulty that they're coming in reporting right? And we want to make sure that we also conduct a really thorough diagnostic assessment, because oftentimes these kinds of problems travel with other problems. We want to make sure that if there's some kind of CO occurring disorder that we able, that we're able to identify that so that we can plan for treatment. Because if there's some kind of CO occurring disorder going on, and maybe those co occurring symptoms play into the antecedents for the behavior or the way in which it's reinforced, where we want to make sure that we address those in treatment. So we have to do a really thorough assessment, not just in terms of the behavior that people are coming in. We. With, but also to understand the bigger picture and the other kinds of vulnerabilities that might be set for people. So for example, if someone has, I don't know, financial struggles, and that's causing a significant amount of stress in their lives, and stress plays into their experience of their symptoms that's really relevant and important, perhaps to address or other kinds of problems, or maybe they don't sleep well, well, most people will report that if they don't sleep well, they're more symptomatic, right? Because, you know, our bodies like to function at optimal levels, and so we want to look at all those kinds of underlying vulnerabilities to make sure that we're addressing all of those things. Because if we if we can do that, then we're more likely to help people, you know, address their goals in therapy, right? If you have underlying vulnerabilities that aren't addressed, it's going to be more difficult to gain traction and have the kinds of outcomes they would like to see. Absolutely.

Michael Leopold:

What are some of the techniques I want to dive in a little bit specifically on the shame piece. And I'm wondering, what kinds of techniques do you find yourself recommending for people experiencing that? I know everyone is is different. Every case is unique. But are there certain patterns you've noticed, or ways that you you approach that when a patient is it feels a lot of shame around around their bfrb

Marla Diebler:

Like I said, bfrbs, I think are sort of uniquely experienced in that there is more shame sometimes involved in that experience of living with a bfrb than with other conditions. Not that other conditions can't be experienced along with shame, but there's a certain amount of isolation that people experience when they have bfrbs, and a certain amount of secrecy and hiding or camouflaging behaviors of the physical effects of bfrbs, and so oftentimes they feel like they're the only people that do this thing, and they've never met anybody else. And so connection with other people who have lived experiences to help sort of normalize the experience and help kind of reduce their sense of what they're like in terms of, you know their own self judgment can be, can be really helpful. So we we typically will set them up with those kinds of experiences, whether it's a support group or other kinds of in person experiences where they can have conversations and get to know other people who struggle with similar behaviors, and then in individual therapy, working on self compassion, so really helping them to develop the ability to treat themselves kindly and gently, to be able to say to themselves and having a hard time, and I'm deserving of comfort and support during this time, and other people would be having a hard time if they were struggling in the same way, and would understand.

Michael Leopold:

I think that's so important. Just reminding ourselves, telling ourselves, like to be kind, and being kind to ourself is so crucial. I think we just let all the stressors of the world we have kind of weigh on us. And I don't know, I find some of the people that are kindest to others, often, maybe don't have that kindness to themselves. I love hearing that, that kind of, you know, always good, good. Good to remember that you had also mentioned connecting them with support groups and opportunities to really meet other people with bfrbs and to feel, you know, you're not alone. Get this in combat. Some of that, that self isolation. Are there groups specific to bfrbs, like support groups, chapters, nonprofits and stuff like that.

Marla Diebler:

Yeah, there are, there are in local communities, in national and international spaces, and thank goodness for, you know, zoom and other online ways of communicating that those, those kinds of resources for support are so much more accessible these days that that support is out there for people. What

Michael Leopold:

do you think some of the biggest barriers in terms of people getting, getting the treatment for, for bfrb, I

Marla Diebler:

think the myths around these behaviors can really, I think, get in the way, in addition to the shame experienced, right? So, for example, the idea of nail biting, right? Nail biting is sort of like the most socially acceptable, I guess you could say, or most, most in, you know, public view, to kind of be FRB, and I think people often dismiss it as, you know, we'll call it a bad habit, right? This person has a bad habit, and there's this sort of implication that they could stop it if they wanted to stop it, or if they tried harder, they could stop it. But it's actually this is a real disorder that causes real impairment and real distress and real emotional pain and physical pain too, sometimes, and it's not that easy to stop even if they want to stop it. That this is a real disorder that is, that is, can be really complicated, even though it seems quite simple. And so I think that's probably the biggest barrier, is some of the myths surrounding it and how it's really not as, you know, simple and straightforward as it might seem. Yeah. I mean,

Michael Leopold:

clearly not. I think a lot of these things people wouldn't do if they could just easily, if it was so simple as to just stop doing it, you know. Especially given all the social pressures around it, and no one, I don't think anyone would choose this to be this, if it weren't something you know, out of their control. Or is there like a social or biological function of bfrbs? Are they some, are there any theories around like, okay, it's a maladaptive thing that does XYZ, like, any thoughts around that? Yeah,

Marla Diebler:

there are lots of different theories, and we don't know for sure, but the predominant theory, really, is that it's a mechanism for people to self regulate, right? People want to feel comfortable, right? And so when they're confronted with some sort of uncomfortable internal experience, whether they are, thoughts, whether they are, you know, mental images, whether they are emotions, whether physical sensations, right, something that makes us feel internally comfortable in our private experience, we want to make that stop. We want to make that go away, right? We want to feel good, of course. So we're built like this, right? And so in an effort to self regulate, we develop different strategies. And people who are prone to bfrbs will usually carry out their bfrb as a way to self regulate in them. In that way, it might feel gratifying. It might feel like a relief. It might not just physically right again. It's not, it's not quite like a tick in that it doesn't simply relieve some rising sense of tension. But it might, if it's triggered, for example, by maybe examining the way their hair looks in the mirror, and they see maybe like a white, coyly thicker hair, and it seems out of place, and that makes them feel really uncomfortable, because they feel like their hair shouldn't be out of place, and it really needs to be, needs to be even or symmetrical, or They shouldn't have white, wiry hairs, they might feel that discomfort, and that discomfort might be met with a pulling out the hair can then bring them relief and satisfaction and okay, they feel better and so they can move on. That's a really simplistic example, but there are all sorts of internal discomforts that are met with hair pulling as the function of trying to bring internal relief. Wow.

Michael Leopold:

I mean, and given that example too, I can definitely see the connection with anxiety and OCD, especially if it's coming from a place of like obsessions or body rumination and things around that I it sounds like there's a high level of CO occurring. You know, prevalence within those communities, anxiety and OCD is part of addressing these also, like understanding your body more, how you feel in the moment, how you're you know, am I feeling stressed? Like kind of doing that, that mental check sounds like yes, you know, because a lot of this comes from, like a feeling in the body. But wondering if you can comment a little more on

Marla Diebler:

that? Yes, absolutely. So just like any other kind of behavioral disorder, like tic disorders, we really emphasize the importance of mindful awareness, of learning that functional analysis pattern right, of being aware of your internal experience and what's going on in your environment as well, and what makes it more likely for you to engage in the behavior, what makes it less likely for you to engage in the behavior? What it's like during the course of the behavior, right from the initiation of the behavior all the way to the cessation of the behavior, and the way in the short term and the long term, you experience the consequences of the behavior, because that all plays into the cycle of reinforcement, right? Whether or not you're more likely to carry out the behavior when you experience whatever that is that made it more likely for you to carry out the behavior what happened just before, right? So we want people to be aware of their emotional experiences and how that might relate. We want them to be aware of their physical urges and how that might relate. We want them to be aware of their physical discomforts and the thoughts that they're having, right, because those things might relate to the way in which they experience these behaviors, or whether or not they experience these behaviors, and that self awareness is key to being able to intervene right, because if you don't know the relationship between a behavior and what's prompting it, you're very likely to be having a really hard time with intervening effectively, right? You need to be aware in order to do something. Same thing with awareness of the behavior, right? So, I mean, some people don't have an awareness of ticking at times right? People can have tics and they don't necessarily see it as a tic, or they don't even know that they're doing it right, because it's so involuntary and it might be occurring outside of their awareness. And bfrbs can also occur outside of someone's awareness, right? So that awareness training is really key, because you can't intervene effectively with a behavior you don't even know that you're doing right, right. Awareness Training is really very important. I imagine

Michael Leopold:

that's what, yeah, a lot of it starts with the foundation of that, because that's, that's how you you know, to know your body and how you feel, and having that awareness. I also imagine that there are benefits of someone going through that awareness training way beyond bfrbs. I imagine that the benefits of that stretch to other things in life, knowing it. When your anxiety, anxiety is flaring, or, Hey, I'm having a really stressful day, my body is tensing in ways that, like you notice those things about you, probably with tick management and stuff too, that I think that the benefits, especially for a child getting involved in this kind of therapy early on, would would have many, many positive impacts down the road. Yeah,

Marla Diebler:

I agree. I completely agree with that, and I think that's the case. And the way that I think about these disorders and treating any kind of problem, really from a psychological standpoint, is from what we call the psychological flexibility model. So it's from an Acceptance and Commitment Therapy sort of foundation, which essentially says that any kind of symptom arises from your response to internal discomforts and trying to self regulate, essentially, right? And, you know, removing the pathologizing from this situation, we all self regulate, right? We all do things to try to make ourselves feel better when something shows up on the inside, like thoughts, images, memories, emotions, sensations, right? These things that make us uncomfortable. We're human, and we all do this, right? And sometimes the things that we do to manage those discomforts are adaptive, right? And sometimes they're not so adaptive. So becoming aware of the way that you manage your own internal states is is key for just to bet anyone to function optimally and live the kind of life that they want to live.

Michael Leopold:

I assume you work with both children and adults, kind of wherever they're at on their journey. Any interesting differences there? Like, do adults tend to experience the shame piece more because they've had this for so long? Or are children more resilient adaptive? The brain's more plastic? I don't know. Any interesting findings around working with different population demographics.

Marla Diebler:

Yeah. I mean, kids and adults are unique to work with. Each group has some some unique characteristics that lend themselves to working with them in different ways. So adults, for example, just by virtue of brain development, right? They have more ability to think about their own processes, right? They can do that self reflection a little bit more easily, and they're able to sort of monitor their own behavior more easily, and they can implement strategies and follow through sometimes more easily than kids. Kids sometimes need more external reinforcement, right, reward systems and things like that in order to to implement strategies. But also, you know, developmentally, kids don't necessarily experience bfrbs during early childhood as problematic in they haven't because of their social development. They haven't received negative feedback from their peers and to them, it's just not troubling yet. I mean, there are, of course, exceptions to that, like if a kid bites their nails down so low that they're causing themselves pain and infection. I mean, certainly they're going to experience that negatively. But in terms of the social feedback, a seven year old who pulls their eyebrow hair, for example, and has no eyebrows, is going to experience that's in the social world with their peers differently than like a 15 year old would, yeah, they pull their eyebrows. So there's a little bit of a difference in terms of willingness and motivation and the way that we might address that, or maybe even not address that, right? If a child is not experiencing their skin picking as problematic, and there are no identified negative consequences, even though their parents might be really worried about how they might be judged or thought of, or how they could potentially get a bacterial infection or something like that. But if that hasn't happened yet, that child might actually not be very motivated to do anything about it, because they don't see it as a problem, and that's okay, too. I love that. Yeah, where they are, you know, definitely

Michael Leopold:

underscores the point that, like, we shouldn't pathologize something unless there is a problem with it and that can be treated through the medical model. I mean, it's actually kind of beautiful that you say a lot of young kids don't see this as an issue that just, oh, it's something I do, because that's always how I thought of my tics as a kid. I was like, Oh, I remember bopping my head in kindergarten, and I was I thought the other kids were weird because they weren't doing it. I was like, oh, no, why don't you guys get the orders to bop your head like I do? And that was my very first tick. And then eventually you get exposed to kind of neurotypical culture and everything, and you realize, oh, there's stigmas around this, and people will bully you and look to treat you differently, even subconsciously, and kind of beautiful that at a young age, we don't always have that, and because maybe there's nothing inherently wrong. Maybe we're just people being people. And I think take from the diagnosis and the medical model, the pathology, what you need to thrive in your life, and beyond that, you know, don't take it personally, because it's not a reflection of you or your worth or value. You know, use these labels as as needed to help you live a better life. But beyond that, they don't define you. You mentioned parents here. We have a lot of parents that listen to the podcast here, who may or may not have children that are experiencing some of this stuff, and I know obviously every case is. Is, is specific, but is there any kind of advice that you would give to parents that may be listening, that suspect some of this stuff in their in their children, and maybe haven't, haven't discussed it with them, or they're wondering is, is this just a tick, or, How do I how does a parent handle this gently?

Marla Diebler:

Because, again, the child might not perceive this as problematic, and if they don't perceive it as problematic, that's okay. Let them be them, right? If it, at some point rises to a level that it becomes problematic for them, right? They're experiencing it negatively, then maybe it's, it's a conversation to have, and maybe to, you know, bring it up gently to the child and ask them about it, and then maybe bring it up to the pediatrician and ask them about it, bring it, bring it to their attention, right? I remember, as you know, Michael, my my 18 year old has Tourette's and when he was little, we noticed it very young, and we just kind of let him be him, until I noticed he was about five years old, and he was trying to read, sitting on the couch, and he was making the sound, and it seemed like it was really bothering him, like it was really distracting him, and it was clearly a tick, it was sort of a humming, sort of sound. And I asked him, I said, is that bothering you, that sound? And he said, Yes, and that was really the first time that we talked about it, because I noticed that it was interfering for him, right? He seemed to like it. It seemed to be distracting him from enjoying what he was reading. So that's when we decided together, like, Would you like to learn some things to try to help you pay more attention to your book and less attention to that? And he said, Yes,

Michael Leopold:

I love that. That's wonderful. And I think, yeah, just really demonstrates like that. That kind approach, non judgmental, be gentle. Be always, if it's not a problem, there's no need to address it. And and then when there is you do that gently. You know, when you think about kind of the future of bfrbs and where we're at with regard to research or advocacy or awareness. What do you think are some of the big goals? Like, where are there opportunities for us to do more? Oh,

Marla Diebler:

research, certainly, we're really just scratching the surface of being able to understand the way in which people experience bfrbs And what causes them. So I think there's a lot to be done. Unfortunately, it's difficult to do the work because it's difficult to get funding to do the work, but I think there's tremendous potential for growth and development in those areas. And also treatment. There aren't any FDA approved medications to help with bfrbs. There are a couple of ideas promising preliminary studies about agents that might be helpful, but we really don't know yet. And so pharmacological research, as well as behavioral research too, there's definitely area for growth in terms of how we help people live with these disorders. You know, we're sort of like, I think, as a as a health care I don't want to say industry, but industry right? In the US in particular, I think we are sort of afraid of the word chronic, right? We kind of expect to go to a doctor, get some medication, or get some treatment, and then the problem is gone forever. And the truth is, we're just not that good. Yet,

Michael Leopold:

we don't know the science of it enough. Yeah, yeah,

Marla Diebler:

not that good. We'd like to think that we are, but we're not. And a lot of these problems, although we can bring people significant relief and we can help them to live full, meaningful lives with their disorder, their disorder might show up from time to time, in to various degrees, and that's okay. And so right now, our goal is to help people live fully, and not, you know, be limited by some condition like a bfrb or a tic disorder for that matter, right? Is to help them live more fully. But there's so much more that we could do in terms of treatment and developing treatments that are more effective for people to help them do that. Do

Michael Leopold:

some people benefit you just given the similarity between ticks and bfrbs, do some people benefit from the tick medications? I don't know if we've ever studied that, but just so there

Marla Diebler:

was one randomized, controlled trial. Legal is a Lanza pneu, and it was many years ago, maybe 2010 at this point, maybe even a little bit older than that, by an author named Van amerigen. He looked at olanzapine in the treatment of believe it was hair pulling, and found that it might be helpful. It was a very small group of participants, so really limited interpretation, but it looked promising. The problem with it, of course, as as with tic disorders, right is that that class of medications can cause a lot of unwanted side effects, and those side effects can be long lasting, even past discontinuing the medication. So it's difficult, especially with the stigma and misunderstandings associated with bfrbs, to justify. Basically prescribing those medications, because you really do have to weigh the costs and benefits right of any potential treatment. So weighing that and also trying to make an argument in clinical trials, when you go to an IRB and say, we want to study this medication for behavior, that seems to be, again, it's much more complex, but seems to be a simple habit behavior. It's a it's a hard sell, and so there haven't been any more studies of those drugs, but, but who knows? Also, it's thought to be a little bit more complicated than that. So whereas tic disorders are, you know, clearly involved dopamine in terms of the neurotransmitters, bfrbs are thought to be a little bit more complicated. Okay, so

Michael Leopold:

there's a different biological profile for bfrbs. I think that also, because I'm still in my head thinking, you know, these just sound like self injuring tics. And I know that, I know it's more complicated than that with regard the triggers of them and the patterns we see with them, but in a lot of ways, there's similarities to just myself injuring tics. And not to oversimplify it, but I was always curious about that. Okay,

Marla Diebler:

yeah, there are some words I mean, but bfrbs are thought to involve not just dopamine, but also potentially glutamate, potentially serotonin. And there aren't a whole lot of imaging studies, but the imaging studies also show that they might be a little bit more complex, whereas tic disorders involve the motor cortex and the basal ganglia, and the expression of tics, the FRBs seem to involve, yes, the motor cortex, but also the affective and reward circuits of the brain as well. So it does seem a little bit more complicated. And although they look, you know, in some ways, very similar. And we look at them similar, we treat them similarly. In terms of treatment, they are a little bit different. I mean, the volition regarding the behaviors the FRBs are more goal directed. They're intentional, they're purposeful. They're not involuntary or semi voluntary, or involuntary, as you might describe ticks, they are more goal directed. I'm uncomfortable. I don't like this hair or this I want to smooth out this bump or I want to remove this scab. And then they have trouble ceasing once they get started. And so it's a little bit more complicated. We just don't know enough to understand it fully, but there's definitely a lot in common. I mean, they're both repetitive behaviors. They both often involve pre monetary urges. They both have first line behavioral treatments that look very similar to one another. They both have similar comorbidities in terms of what occur more often, right? That OCD, ADHD, tic disorder, bfrb kind of family of problems. They all co occur so so much in common, but also some key differences that probably make bfrbs a little bit more difficult to address and understand.

Michael Leopold:

Yeah, and I want to focus on the treatment piece of them, you know, if some of the treatment is similar, such as like c bit, let's suppose I'm a parent, and my my child has bfrbs, and we've both, you know, both feel it's in the best interest to have that that address. Professionally, we're looking for a c bit provider. They know a lot about tics. Do they know about bfrbs? Is? Is? Does that matter that I find a bfrb knowledgeable CBI provider? Where do I begin?

Marla Diebler:

I think it's important that primarily, if you can find someone who has expertise in bfrbs, that that's probably your your first go to provider, someone who understands bfrbs, because there are so many misunderstandings about it, not just in behavioral treatment, but also in and how you treat it pharmacologically. So for many years, bfrbs were considered to be a kind of OCD, and they were studied as such too. So lots of providers who don't know the nuances of treating bfrbs, I mean, prescribers, will say, Oh, well, this is treated with an SSRI, but most people don't experience very much relief with an SSRI, and so it's important to have a provider who knows the nuances of what bfrbs are like and the differences. But that being said, if you don't have access to a bfrb knowledgeable treatment provider, someone who understands ticks and knows the c bit protocol, that's a good bet too. I would, I would go with that, with a little extra education, hopefully they'd be open to learning a little bit about specifically bfrbs That makes them a little bit more complex. But yes, someone with a good foundation in behavior therapy that understands how to engage in that kind of treatment protocol would be a good pick. And I and

Michael Leopold:

obviously your your clinic is able to do this. You guys are you have that specialty in bfrbs, I know some c bit could be done, like virtually, like teletherapy. Is that something that your clinic does? Yeah,

Marla Diebler:

telehealth has become widespread everywhere, right? Okay, yeah, this is definitely a treatment that lends itself to telehealth pretty easily, as much as in person. But call me old school, I still prefer seeing someone in the office. Are you

Michael Leopold:

able to see my therapist in the office physically, like even though I had the option of virtual I don't know. It just feels more I can engage more. It's more immersive, sensory. I don't know I helps me be more vulnerable. I think because I'm physically in the person you know, in their space, and not like hiding behind a phone or something. So that is my personal preference. But I know everyone's different there, aside from your clinic, are there others that you can recommend, not necessarily specific clinics, but like resources people can go to to find c bit experts that also that are knowledgeable in this kind of stuff?

Marla Diebler:

Yeah, yeah, there are some great nonprofits that have good treatment provider databases. So there's one called bfrb changemakers, for example, the International OCD Foundation, although, again, it's not OCD, but a lot of people who are involved professionally with the International OCD Foundation also have expertise in bfrbs, and they have a large provider database. So the iocdf is what we call them. The iucdf is a great resource. There's organization called the picking me foundation specifically supports the skin picking community. They're a great resource. And there are a number of resources around the world too. There's a an organization in Mexico called the CCRC that is essentially bfrb in in for the Spanish speaking population, there's the bfrb organization of UK and Ireland. So there are some pockets around the world that make support and finding resources near them a little bit more accessible, and

Michael Leopold:

to our listeners, we'll include some of those organizations in the speaker notes for this episode, so you can take a look at them there and visit the websites, and, you know, find a good match for for you and your family. Dr Diehl, it's been wonderful having you on the episode here. Any remaining comments, thoughts, recommendations you'd love to get out to to our community. I mean, I think

Marla Diebler:

with with any of these struggles, right, knowing that you're not alone, knowing that it's nothing to feel shame or secrecy about, knowing that there is always help. So if you feel like your life is being limited in some way by any of these struggles, right? Could be bfrb, could be tic disorder, could be anxiety, could be depression, it could be anything right that there is good evidence based care available and out there, whether you live near a treatment provider, whether you can log on through your phone to access treatment or through a computer that help is available, absolutely

Michael Leopold:

and The New Jersey Center for Tourette's Syndrome is also a resource. If you're looking for referrals for providers, everything from psychiatrists to psychologists to social workers, we are more than happy to connect you to those even if you live outside of the state of New Jersey. Our reach is national, technically International, so please don't hesitate to contact us. Dr devler, love having you on the uptick here. I hope you have a wonderful rest of your day. Thank you so much. You too. Thank you for listening to the uptick. Brought to you by The New Jersey Center for Tourette syndrome and associated disorders, empowering you to stretch the boundaries to live your best life. You

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