100 Changemakers for 100 days of BFRB Awareness
In my first college psychology class, trichotillomania took up just one sentence in the whole textbook.
By my freshman year of college, I had already been living with trichotillomania (also called hair pulling disorder) for seven years, but I didn’t understand much about it at all, besides the fact I couldn’t stop no matter how hard I tried. I had come to Syracuse, New York, to study psychology because I thought I wanted to be a therapist. I had no interest in research; in fact, I thought it was boring and dreaded the prospect of having to take research methods and statistics courses for my degree.
Still, I remember the spark of curiosity when I noticed that, in the punishing Syracuse winters, if I happened to leave my gloves on in class, it was the only time I didn’t pull my hair. That was the start of my love affair with clinical research. Knowing BFRBs were poorly understood by the broader scientific community, not just me, was what made me want to read the few studies that were published at the time, and to come up with ideas to test for the answers to my own burning questions.
After graduating, I started working in biotech, where I quickly realized it’s not enough to conduct and publish research if the people who are meant to benefit from it can’t understand it. This was especially true with BFRBs, where I found having an understanding of the disease biology and treatment landscape was a necessity to advocate for myself with employers, family members, friends, romantic partners, and even healthcare providers. I wrote articles on trichotillomania for media outlets like STAT News, SELF Magazine, and Psychology Today, trying to merge my personal experience with the current research, and at times being the first person to write about BFRBs for some of these platforms.
During this time, I was also part of the TLC Foundation for BFRBs’ Young Adult Action Council, where I formed a committee dedicated to Scientific Literacy (affectionately nicknamed ‘SciLit’). For three years, our small team wrote summaries of new studies in plain English, held journal clubs to discuss evidence-based topics with other members of the community, and spoke at conferences to demystify clinical research as a career path. To this day, I still consider SciLit one of the highlights of my career.
Since my first exposure to BFRB research, the field had expanded rapidly, and at a certain point I felt that initial spark renew so strongly, I decided to go to graduate school with the intention of furthering my study of BFRBs. For my Master’s thesis, I had the opportunity to create my ideal study, so I looked at how mobile and wearable technology can help people with BFRBs by disrupting the habit formation process. The study was by no means simple or straightforward, but it was heartwarming to see how willing the community still was to participate in research, and it was the jumping-off point for a fruitful collaboration with HabitAware that continues to this day !
I didn’t make a career out of BFRB research like I’d imagined in my undergrad days, but my journey living with trichotillomania has been shaped by all these experiences. The first class I took for my Master’s was all about habit formation; that class also did not directly mention trichotillomania either, but one of the first things I learned there was that ‘self-control’ is a myth. When people do difficult things, it is not through white-knuckling in the name of ‘self-discipline’. Rather, it’s because they intentionally arranged their surrounding environment to make the new behavior actually feel effortless (the academic name for this concept is ‘stimulus control’), which set them up for the amount of repetition it takes to successfully build an enduring habit.
When I considered how that framework might apply to my hair pulling, that familiar spark reappeared once again. Over the past few years, I’ve grown my hair out by wearing a hair system that made it physically impossible to reach the areas I would pull from the most. I also started going to therapy to get some support with the lingering traumas, big emotions, and all the other detritus of being a person - I know from the scientific literature that emotion regulation is just as vital as anything to do with my actual hair, so therapy has made a massive difference in allowing me to be kinder to myself.
I still pull my hair and will probably never stop, but I have a better understanding of myself now than I did ten years ago and have developed a catalogue of strategies for all my biggest triggers, derived over years of experimentation. Fortunately, you don’t need a fancy degree to be a researcher in your own life – all it takes is a little curiosity.
Support BFRB Changemakers
BFRB Changemakers supports BFRB healing through community. Our mission is 3-fold:
- raise awareness of debilitating conditions of Body-Focused Repetitive Behaviors (BFRBs) such as compulsive hair pulling (trichtotillomania), nail biting (onychophagia), and skin picking (dermatillomania),
- increase and improve access to care, and
- advance community recovery.
Through the BFRB Changemakers Training Academy we strive to increase access to care by offering Continuing Education training to new and seasoned mental health treatment professionals.
BFRB Changemakers is a 501c3 non-profit (EIN #93-1544492). Please make a donation to support these efforts!
