The idea was originally inspired by Sarah Pennington 1, an outspoken member of the BFRB community with trichotillomania (hair pulling disorder), when I met her and her psychiatric service dog, Daisy, at a one-day BFRB conference 2 in Washington, D.C. a couple of years ago. Daisy alerts and tries to interrupt Sarah whenever she starts pulling. Sarah told me her family hired a regular dog trainer, who they educated on BFRBs, and then the trainer went to work helping Sarah train Daisy for her specific needs. But I wonder: what might Sarah’s process have looked like if her dog trainer was BFRB-aware? Might more people with BFRBs consider this option?
Yup, I’m one of them.
Back up a second: until right now, I’ve never spoken publicly about my association to said BFRB community. Let’s get the what and the why (now) going:
I struggle with skin picking disorder, aka dermatillomania, aka neurotic excoriation, aka (skin) excoriation disorder—that last entry courtesy of the DSM-5, circa May 2013 3 (it’s about time…it took that long for skin picking to officially become a “thing” 4 in the bible of therapists and psychiatrists). It became a significant problem for me when I was 20, after returning from my study abroad semester in Italy. The experience was wrought with ambivalence over having and desperately trying to savor the good times—and the traumatic experience(s) that also occurred while abroad that frankly, just sucked, and ultimately left me with PTSD. But back to the real story here (it’s not all about trauma 5, though we all seem to be highly sensitive human beings more easily impacted by stressors than others).
What are BFRBs? Why do people do them?
For those of you who have no idea what any of this behavior stuff is or means, body-focused repetitive behaviors (BFRBs) are a class 6 of psychiatric, neurobiological disorders that profoundly impact a person’s nervous system 7. People with BFRBs might pick at their skin (or lips or nose), pull (and/or ingest) their hair, bite their nails, chew the insides of their cheeks, et. al. because the result of these behaviors sends electrical impulses to the brain via nerves in one’s skin, hair, nails, etc.
Why is this so? BFRBs are great equalizers (as science writer Sara Talpos perfectly summarizes. Disclosure: I was quoted in her article, The hidden epidemic of compulsive hair pulling 8). For example, if I’m overstimulated or anxious, I might spend some time in front of my bathroom mirror finding zits or flaky pieces of dry skin to pick at to bring my level of stimulation and anxiety down and back to equilibrium. If I’m bored or spaced out or in some way understimulated—let’s say while driving—I’m likely steering with one hand and running my fingers through my scalp with the other, searching for pieces of skin that feel different or interesting in some way to scratch off. Both of these scenarios actually work in terms of bringing myself back to internal equilibrium by means of completing those tactile, equally self-soothing and self-energizing behaviors: picking at my skin in different ways, based on what my nervous system craves.* 9
That search for nervous system equilibrium is so much more powerful than the realization that I’m increasing the amount of scarring across my body every time I equalize (pick my skin). These things are called “disorders” for a reason: though many of us can hide some or even all of the physical consequences at times, there is an innate duality and ambivalence about giving your nervous system what it demands (the BFRB behavior as the easiest way to equalize) and resisting the urge, because we know it simultaneously feels “wrong” and “disgusting” and often makes us feel ugly, inside and out. This not-so-pretty truth is one I know from experience, and from connecting with countless peers in the BFRB community.
The truth about BFRB treatment options.
And that’s why these disorders are so damn hard to treat (because your body found an incredibly effective way to return to equilibrium at a moment’s notice, and it’s not easy to find a suitable replacement), in addition to the fact that hardly any mental health professionals are adequately trained to treat BFRBs. Based on my own experience, I’d be shocked if your psych provider even knew what the term BFRB stood for without being the one to educate them first. Worse, straight up cognitive behavioral therapy (CBT) doesn’t tend to cut it anyway, and therapists trained in ComB (the Comprehensive Model for Behavioral Treatment) 10, which is a behavioral treatment for BFRBs continually gaining ground, are far and few between. In some states like mine (New Hampshire), not a single clinician has been certified by BFRB.org 11. Even though the organization offers specialized training in BFRB treatment for clinicians 12 for continuing education credits.
Sure, there are a few other options: some people have had success in the OCD-focused treatment realm of ERP (exposure and response prevention 13) or habit reversal training 14. But again, it’s not always easy to find a clinician, and there’s no guarantee of success (or maybe I’m just jealous I haven’t had the opportunity to try specialized treatment one-on-one). Others have noticed some response to various medication treatments 15 (myself included—for a time), but medication alone is not enough to cure BFRBs, and in my opinion, you’ll need a creative, well-informed (or at least well-connected) psychiatrist willing to take some risks with you to find something that might help—at least a little bit. It gets trickier when I tell you about the studies going on that are looking into subtypes of BFRBs 16, which means treatment needs to be all the more individualized (by the way, there’s still a lot unknown about BFRBs, hence all the research 17).
On a holistic treatment level, more recently I learned about Christina Pearson’s 18 (founder of what is now BFRB.org 19, and my oldest friend; as in, I’m 28 at the time of this writing, and Christina loves bragging about being 62, which I love as well) mindfulness classes through Heart and Soul Academy to help support BFRB living skills 20. It was helpful, especially the camaraderie with others in the class, but it was also not a cure (not that I was expecting one). And Dr. Christy Garner (an all-around amazing human in our community doing awesome work) is working on an app experience called Beyond Pulling 21 to guide people through skills to help mitigate and replace BFRBs, with the ultimate goal of finding balance in one’s nervous system (if you think you can “get over” your long standing BFRB in a vacuum without assessing the level of balance in your life in general, well, you’re just very wrong, or very lucky). Overall though, Dr. Christy’s work is extraordinarily promising.
It’s not enough yet, and I want to help. Woof.
Here comes the but: when it comes down to it, although there are options out there to help myself and others mitigate the impact of our daily experiences living with BFRBs, the reality in which we live is that at this very moment in time, large scale access 22 to effective treatment options totally freaking blows. It’s just not there for the majority, as much as we’d like to believe otherwise (we’ll get there one day…).
The severity of the issue becomes even more apparent when you learn that an estimated 22% of the population is affected by body-focused repetitive behaviors 23, and yet there is still such a lack of public knowledge 24 and understanding (and therefore empathy), that cause many to continue suffering in silence, alone, with a lifetime of shame to sort through.
Which starts the process of bringing us full circle. The idea of BFRB service dogs has been floating around my brain and gaining momentum over the last two years. In the last year and a half, I decided that if I could do absolutely anything else in the world besides (or in addition to) my digital marketing day job, it would be to train psychiatric service dogs for people with BFRBs. Maybe I can be the one to help offer another (alternative) treatment option—in the form of a fuzzy face that will never judge yours.
Truth be told, I’ve never been much of an advocate before. Historically, I’m a fiercely private person with a tendency towards cyber paranoia who doesn’t use Siri because I don’t want to give Apple my voice data. I use separate email clients for work and personal use, for fear of any type of crossover, concealing a larger fear of being “found out” that I belong to any number of stigmatized groups (internet forbid some unauthorized human learn I go to therapy). Separation between work and life has been my rigorously calculated modus operandi since forever.
What drives me has always been playing more of a mentor/advisor role, and holding space for people while helping them grow and change and make some sort of impact. And most importantly, above all else, creating a space of validation and safety (how else can you truly connect with others like you?). It’s why I enjoyed running the BFRB peer support group in Boston for three years until I moved to Manchester, New Hampshire, and why I’ve sought out mentoring roles working with college kids from my alma mater (Plymouth State University) after I graduated in 2013.
And yet, here I am: I’ve finally accepted that the only way to be fulfilled in what drives me as an advisor-type human (side note—this test about what drives you 25 is awesome) is to finally step into vulnerability and accept my secondary role as an advocate. It feels like a means to a worthy end.
Almost dying changes your priorities (you’re welcome).
What got me here, ready to speak out? Time for a long, deep breath and a big gulp of saliva. I recently had a horribly bad reaction to a new medication (taken as prescribed). Sure, I had a lot of life stressors going on and had been feeling somewhat depressed and overwhelmed for a few days, but I’d still been functioning and trying to take care of myself. That is, until the day after I took the new med, and my brain stopped working (it literally felt like my frontal lobe turned off). The only things that made sense at that point were the suicidal thoughts. I had made up my mind to carry out my plan within the next few days, which also made total sense at the time.
Something deep inside my lizard brain wanted to keep breathing, and it was by this unconscious process that I somehow was able to speak up about how dark and bad it actually was—the night before I was to set my plan in motion. I landed in the hospital for the first time ever. And then one more time about a month later.
Don’t worry; now, I’m actively doing the work I need to heal, and I have faith I’ll continue to recover. My brain just needs more time while I’m finding new meds to re-establish biochemical stability. Side note: More of the time now, I can find comfort in believing that at the very least, my kinda sorta almost near suicide attempt—and subsequently dysregulated brain—is not my fault. It’s still hard, though.
Needless to say, I’m not sure how the next several months will shake out. But I’m already at the point in my recovery where I’ve realized the following points:
- It’s not worth my energy to hide my struggles so much anymore, nor does it serve me, nor my cause.
- If my digital marketing career is negatively impacted by expressing this vulnerability, I think I can accept that now.
- And I’m also petrified of stepping into said vulnerability. And that’s valid and okay. I’m mortal.
- I used to consider myself a “closet advocate” because I was only open with “my people”; now, I feel compelled to speak out to help both myself and others.
- I have a greater sense of meaning and purpose, and I’ve been given a new perspective with which to exercise it (this cause).
- I’m working through the risks associated with exposing a stigma that still looms large.
No more secrets. It’s story time.
And so, BFRB Dogs is no longer my little secret. I’ve told many that the reason my husband and I started fostering our first dog, Annabelle (Bellie!), is so I can gain experience in canine behavior and training, with the ultimate goal of training psychiatric service dogs. But again, until now, I wasn’t telling the whole story; I was keeping quiet about the BFRB component, even though that’s the thesis of the idea.
Speaking of stories, a spin-off project I’m working on to help raise awareness for BFRB Dogs is my upcoming BFRB Stories podcast 26. If you read between the lines, you’ll understand that BFRB Dogs is about empowering individuals living with BFRBs to live their fullest life, to live their story, and to walk intentionally into every day, regardless of what it holds. To that end, it is incredibly important to spread the stories of people impacted by body-focused repetitive behaviors, including stories of loved ones, families, friends, and even clinicians in the BFRB community to give us updates on treatment options that may help shape our day-to-day BFRB stories for the better.
If you’d like to inquire about becoming a guest on the BFRB Stories podcast, please reach out via the Contact 27 form. In the meantime, thanks for holding space for me to share my story with you, and for learning why I’m ready to fulfill this deep need inside me to do more, and to commit to these projects for myself—and a greater good.
Wanna help me help others?
This is totally just the beginning. I have a lot of work to do now that I’m waking up, and I’m looking forward to the journey, one step at a time. It belongs to you just as much as it belongs to me. Thanks for riding along with me, and supporting however you can (want to help GoFundMe? 28). I look forward to hearing from you! 29
UPDATED: November 29, 2018
UPDATED: February 15, 2019
- *Dr. Christy Garner explained these concepts perfectly in her presentations at the 2017 and 2018 Heart and Soul Academy BFRB retreats. I was a participant at both.
- The hidden epidemic of compulsive hair pulling (Mosaic)
- The hidden epidemic of compulsive hair pulling (Mosaic)
- BFRB Stories podcast
- BFRB Dogs contact form
- BFRB Dogs GoFundMe
- BFRB Dogs contact form