100 Changemakers for 100 days of BFRB Awareness
Part I: Confusion
Trichotillomania entered my life at 13-years-old without fanfare. One day I was bored, was twirling my long, coarse, beautiful hair, and almost accidentally, pulled one out. And I didn’t hate the way it felt. Which was weird. I pulled another. Then another. And then…a root! I showed my little sister in fascination – wasn’t it cool?
My parents did NOT think it was cool. My mom confronted me anxiously with a ball of my hair she’d pulled from the vacuum cleaner. My dad exclaimed in horror one Christmas when I sat in front of him and he realized that my mom was right – I HAD pulled my hair to the point of a visible bald spot. The shame set in. I was embarrassed. And so began a high school career of creative hairstyles, hats and made-up excuses for why I didn’t want anyone too close to me, why I didn’t want to go swimming, and why I didn’t want anyone to French braid my hair before the big game. All while being unable to answer the question on both my parents’ and my mind: why was I doing this?
Part II: Frustration
In college I began the quest for answers and a cure. This behavior was too strange not to have some explanation. I went to my college dorm computer lab in the mid-90’s and searched “hair pulling.” The search turned up a word I’d never heard of, Trichotillomania, and I clung on to it like a life raft. This behavior had a name! And there were others like me who did the same thing! I found the Trichotillomania Learning Center (now BFRB.org) and learned everything I could about the disorder – at least enough to know that we didn’t know much. But surely the professionals would have an idea of what to do!
Armed with my self-diagnosis, I marched hopefully into the first of many disappointing therapists’ visits, where it turned out my search for answers was just beginning. There was no cure, no real treatment even. Usually, the mental health professional I was paying dearly to help me get to the bottom of this condition was googling with confusion right along with me. I tried medications, I tried processing my relationships in therapy – but still I pulled my hair out. By the root. To the point of bald spots. The frustration and hopelessness set in and I fumbled blindly in self-hatred for many years, convinced that Trich would always be the center of my life.
Part III: Acceptance
At some point I realized that I look really cute in hats, and that wigs were fun to play with! My personality and sense of style emerged. I found a few hair solutions and nervously tried them on for fit. Over time, I began to focus more on how I was feeling than how much hair I had. It became about the emotions behind the pulling, not the hair itself. As soon as I let go of allowing hair to define me, and shared my reality with a few people close to me, Trich lost its power. And that’s when things really began to get interesting.
I fell in love and married the man of my dreams. I had babies and watched them grow into amazing humans. I traveled, built a career, and maintained lifelong friendships. I built my dream house and found a hobby I love. Once I was living a big, beautiful life that had nothing to do with hair, I gained the bandwidth and confidence to share my story and re-engage with the BFRB community. This winter, I started The Trichy Gardener Instagram page to share what thriving with Trich can look like. It doesn’t have to look like trauma and sadness and despair. But as I connected with the stories and struggles and frustrations of our community, it brought me back to the original question. I’ve built a BFRB toolkit that helps me white-knuckle through tough times, and I accept that Trich may be a lifelong companion. But don’t we still want to know what combination of genes, environment, and lifestyle converge on 1-2% of the population in this interesting way? I guess I still do.
Part IV: Curiosity
The teenager in me was looking for an answer to explain the behavior. The young adult in me clung with bloody fingernails to the idea of a “cure.” In my 30s I learned to love and accept the heck out of myself. These days, deep in my 40s, I would say that I’m more curious about Trich than anything. Is there still more to this story?
I’ve used a functional medicine approach (searching for root causes, not just treating and managing symptoms) in several areas of my health, why not for Trichotillomania? We have a robust toolkit for behavior awareness and urge management….but what causes the urges to begin with?
Having lived with a pretty severe case of Trich for 33 years, I know that it’s complex. My recent research has led me to think of my physical brain as my body’s hardware, and my mental health as its software. The software must be managed, cared for, and upgraded from time to time. But this can’t be done if the hardware is in bad shape. I take care of my brain’s hardware by eating nutritious food, getting plenty of exercise, prioritizing sleep and targeting supplements to target deficiencies. I work with a functional medicine provider to optimize my physical health, and a psychiatrist to manage medications that help with mood and anxiety. My goal is to keep my physical brain as healthy as it can be. I can then manage my mental health with stress relief practices like yoga, meditation, journaling and therapy. It's a complex condition that requires a complex solution, not a quick fix or cure. But my curiosity is sparked and I’m back in the game!
My hope for you is that you find comfort in our numbers, solace in our stories, and acceptance of the beauty we all possess. And it has nothing to do with the hair on our body. Much love!
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!