A REFLECTION ON THE 2018 CONFERENCE ON BODY-FOCUSED REPETITIVE BEHAVIORS (BFRBS)
Here are some powerful and moving take aways by Carlee
I’m still riding the high from my first BFRB conference. To be honest, even though I have been meaning to go to one of these conferences for 15 years, I had fairly low expectations. I told myself that I already knew everything there was to know about BFRBs and assumed I wouldn’t get too much out of it. But I was so wrong. So wrong. This event completely exceeded my expectations.
What I learned about myself:
I am beautiful. Yea, seriously. All these negative thoughts I’ve had about my body are all in my head. They aren’t real. What’s real is that I am human and that is a beautiful thing. I especially love what Kimberley Quinlan said many times this weekend about society’s expectations. What we think we should look like are all lies. Society’s expectations for our hair, our hips, our abs, and even our face, were decided by a group of men sitting around a table in the 1950s. Who said we should have a big butt? Who said we should be skinny? Who said we should have smooth, perfect skin? Who said we should have a full head of shiny hair? The men sitting around a conference table deciding what to sell us next to make us feel like we’re not enough–that’s who. People with BFRBs only hide their conditions and feel shame about the way they look because society has expectations for how we should look. I call bullshit on that.
I am enough. And I’m not too much. This is me. I am a human who takes up space in this world and deserves love exactly as I am right now.
The past doesn’t exist–there is only NOW. I can’t change the past and the past actually doesn’t matter. I can only live my life moment to moment. There’s no point fussing over what has happened nor any benefit to worrying about what might happen. All I have is now.
I truly accept who I am. I accept that I’m human and make mistakes. I accept that I can’t change my past and must live life one step at a time. I accept the body and brain I was given. I even accept that I struggle with this trichotillomania disorder.
This disorder is a blessing. Without it, I would not have gone to this conference, I would not have pursued my own spiritual and emotional self-growth, I would not have the empathy and compassion for others that I do, I would not be the person I have become. BFRBs are the way our bodies tell us that something is off-kilter–we just need to listen to it!
I give up on perfect. Perfectionism is not worth it. It only holds us back from our own growth, creativity, and feelings of accomplishment. By striving for perfection, we’re so focused on excellent “perfect” results that we entirely miss the journey. And in fact, I’m seeing that the journey is where our life actually happens and the difficulties we experience are not obstacles in our path but are the path. Without obstacles, who would I be?
“It may seem difficult at first, but everything is difficult at first.”— Miyamoto Musashi
I can do hard things. Even when everything seems impossibly overwhelming, keep going! This is another gem from Kimberley Quinlan to remind us that we can do hard things!
5 more reasons I love this conference:
- I made friends instantly, effortlessly, and authentically. Having a BFRB can feel isolating at times, especially because most people feel shame, hide their disorder, and don’t talk about it with strangers. But at the BFRB conference, everyone is in the same boat. You start talking to someone you just met 5 minutes ago and they’re already finishing your sentences. Everyone is simply so amazing–so friendly, so caring, so supportive! I have left this conference with some real friends who get me and I am so grateful for their support!
- This is where the experts convene. I heard from and met the people working on trichotillomania and dermatillomania research, both students doing their Ph.D. research and professional researchers who make this their life’s work. Psychiatrists, clinical psychologists, and therapists shared their clinical experience working with BFRB patients as well. My heart is so full of gratitude seeing these people commit their professional lives to finding effective treatments (possibly even cures!) for BFRBs. There is still so much we don’t know about the disease, so the professionals are there to share their own expertise but also to learn themselves.
- There’s such diversity in attendees. There were young children, teenagers, college students, young adults, and adults all the way into their 60s sharing their stories and looking for answers. There were people from all over the US and the world (the UK, Scotland, Germany, Australia, Canada, etc.). And perhaps most touching were the parents and even grandparents advocating & seeking advice for their children and grandchildren–I’m pretty sure more than a few of us cried hearing the parents’ heartfelt stories trying so hard to help their children.
- The sessions themselves were all so fantastic. Some material was a review of what I’ve heard before, but the repetition was actually useful. Sometimes it takes a few times to drill a concept into your head and I really appreciated how some of the most important concepts were drilled into us over and over again (ahem, thank you, Kimberley Quinlan, for that!). Most sessions were novel, though, and ranged including small group conversations around a particular topic, presentations on relevant scientific research, and inspiring keynote talks. Everything was amazing.
- The overall energy within the conference was one full of compassion, unconditional acceptance, hope, kindness, authenticity, and good feels all around. I just don’t think there’s a way anyone could have walked away feeling hopeless or disconnected. There’s just no way.
So what’s next?
OK so I made some amazing personal progress and the conference was phenomenal. But I think it could be better. The current recommended treatment for BFRBs is psychotherapy and that was quite evident at the conference where the majority of sessions discussed how to accept and just learn to deal with the behavior. I think mainstream treatment is still missing one incredibly important component (or perhaps is glossed over too quickly) that was glaringly obvious at the conference.
You’re probably going to guess what I’m going to say, but it’s FOOD. Nobody talked about food beyond a quick mention that good sleep, exercise, and eating habits can help with emotional regulation. The food itself provided by the hotel was inflammatory or lacking in necessary healthful protein & fats. I witnessed the kids being given candy. The adults were fed a steady diet of muffins and coffee between sessions. I didn’t even eat any of those things and I still feel bloated from my erratically unhealthy diet over the weekend. I didn’t go to every session either, but the ones I did go to didn’t mention diet as an intervention tool, yet Dr. Joseph Garner presented his research on animal models of BFRBs and found that a refined carbohydrate (i.e. sugar) diet fed to mice increased BFRB behavior. We also have evidence that antidepressants are completely ineffective in treating BFRBs but antioxidants, like NAC and GSH, inositol, Milk Thistle, and possibly cannabinoids may be more effective than placebo. So why aren’t we talking more about inflammation and functional root cause approaches to BFRBs?
Now there aren’t any scientific studies [yet] backing up my theory, but after talking to others about their experiences cutting sugar or caffeine or gluten, my own experiences changing my diet, and the research on diet and other mood disorders, I’m a little fired up about this. Why aren’t we talking more about this in the BFRB community? I think it’s worth a shot and am committed to looking for answers from a new playbook.
Grant, J. E., Odlaug, B. L., Chamberlain, S. R., & Kim, S. W. (2011). Dronabinol, a cannabinoid agonist, reduces hair pulling in trichotillomania: A pilot study. Psychopharmacology, (3), 493. doi:10.1007/s00213-011-2347-8
Grant, J. E., Odlaug, B. L., & Kim, S. W. (2009). N-acetylcysteine, a glutamate modulator, in the treatment of trichotillomania: A double-blind, placebo-controlled study. Archives of General Psychiatry, (7), 756.
Leppink, E. W., Redden, S. A., & Grant, J. E. (2017). A double-blind, placebo-controlled study of inositol in trichotillomania. International Clinical Psychopharmacology, 32(2), 107-114. doi:10.1097/YIC.0000000000000156
Vieira, Giovana de L T, Lossie, A. C., Lay, D. C., Radcliffe, J. S., & Garner, J. P. (2017). Preventing, treating, and predicting barbering: A fundamental role for biomarkers of oxidative stress in a mouse model of trichotillomania. PLoS ONE, (4) doi:10.1371/journal.pone.0175222