October 1-7 is BFRB Awareness Week, and I think it’s about damn time that I shared my journey with everyone.
Since I was about 13 years old, I have struggled with a disorder called Trichotillomania (Trich for short.) In a nutshell…I get strong, sometimes uncontrollable, urges to pull out my hair. Someone with Trich can pull hair from anywhere on their body – head hair, eyelashes, and eyebrows are the most common.
At least 2 out of 50 people have a BFRB (Body-Focused Repetitive Behavior.) This is an umbrella term that includes behaviors such as skin picking and nail biting, as well as hair pulling.
The medical community still knows relatively little about these disorders – they have theories, but haven’t officially determined the root cause. As you can imagine, it is incredibly frustrating not to know what is going on inside your body.
The urges to pull can be so ridiculously strong. One way I can describe it is imagine playing an arm-wrestling arcade game. That’s like the fight I have with my brain to resist the urges. I’ve been pulling for so long, it has become instinctual. Sometimes it’s intentional, or it’s subconscious and I don’t even realize that I’ve started doing it. The triggers to pull can come from many sources. For me, it’s usually emotional triggers – anxiety, frustration, sadness, etc. I will start pulling out hair before I even realize it and stop myself. When my mind is in the “zone”, all rational thoughts go right out of my head. I know damn well what the consequences are going to be when I wake up the next morning and look at myself in the mirror…I’ll want to kick myself for the damage that I’ve done. But in the moment, I just don’t care. Pulling my hair is satisfying in a way that is hard to explain. It is a love-hate relationship.
The distress that comes from Trich can be completely debilitating. At its worst, you feel like total shit. Ugly on the outside and inside. Ashamed. Inferior. Powerless. One of the hardest things about living with this disorder is having to experience negative judgements and treatment from some people. Our society has become so obsessed with appearance. It is hard enough being so critical of ourselves, without having to deal with others’ perception of what is “normal.” It’s sad that BFRB’s are not more widely known about. The feeling of being supported and accepted, especially by family and friends, is a huge comfort for anyone coping with these disorders.
When I moved out of Colorado in October 2011, my pulling had gotten so bad that I decided fuck it, I’m just going to shave my head. (The first time of many!) It ended up being a blessing in disguise. It was such a huge sense of relief being able to start over. That experience was also a huge eye-opener, getting to see people’s reactions on a whole new level – both positive and negative. If I had a penny for every time someone asked me if I have cancer, I’d be rich. But the people I’ve actually told about Trich haven’t been judgemental at all. Some even knew someone else who had it too. Up until I shaved my head, I had been completely hiding my disorder. I hated talking about it, even with friends and family, because I was ashamed of it. I was also scared shitless of being vulnerable. When I shaved my head, it was the kick in the butt that I needed. From then on, I started opening up about Trich.
I held a lot of resentment toward my disorder for a long time. But as I’ve gotten older, I’ve grown so much as a person. 15 years later, Trich still affects my daily life, but I’ve come to terms with it. I believe you can only feel sorry for yourself for so long. It’s a waste of energy being angry about circumstances that are out of our control. I still have those moments of being pissed off about having this disorder, but I just tell myself that I have to move forward. I try to live by this motto: “Do what you can, with what you have, where you are.”
I’m willing to be vulnerable and tell my story, because it’s important. I’m not doing myself or anyone else affected by BFRB’s any favors by suffering in silence. More than anything, I want to educate people about BFRB’s to broaden awareness. I also want to empower others who struggle with these disorders that you don’t have to live in fear or shame. You are no less of a person for having this. Be proud of who you are.
To learn more about Trichotillomania and other BFRB’s, please visit http://www.bfrb.org.
Thanks for reading this.