Why I Will Never Stop Talking About My Trichotillomania

By: Gessie Perez

October 1st marks the start of Body Focused Repetitive Behavior (BFRB) Awareness Week. It is a time to shed light on trichotillomania (hair pulling disorder), dermatillomania (skin picking disorder), and other related BFRBs. I have had trichotillomania since age 11. I pull from my scalp and eyebrows.

My friends and family can expect me to be talking about these disorders this week -- a lot. It wouldn't be the first time though that they have heard my story. I regularly talk about my trich on my social media accounts. In fact, earlier this year I created a separate facebook page exclusively for documenting my trichotillomania journey. Yet, I continue to post on my personal profile as well.

Fairly often, the OCD and anxiety part of me will ruminate and second guess myself. I'll worry that I'm being ‘annoying’ and excessive. In the back of my mind I think to myself “your friends are probably tired by now of hearing about this all the time.” But I try my darndest to push past those thoughts, and I still keep sharing anyway. I remind myself exactly why I share.

I have been publicly open about my trich for only about three or four years. I “officially” came out through facebook, and to my utter surprise at the time, was met with nothing but positive support from family and friends. Over the years, since I first publicly shared my story, I have become increasingly more comfortable talking about it -- to the point where it's not even uncommon for me to talk about trich to someone I've just met. Over course, I don't outrightly blurt out “I pull my hair out” the second I meet someone. But if I can somehow work it into the conversation in any way, I will.

Towards the end of my senior year of high school, after I had shaved my head, when one of my teachers complimented me on my new do and asked if there was a specific reason as to why I did it, I boldly decided to tell her the truth: that I have a condition that causes me to compulsively pull my hair out. Similarly, when a classmate said how much she liked my buzzcut, I took it upon myself to use it as an educating moment, and explained to her trichotillomania is.

I have had articles published on online media outlets, one of them being Huffington Post last year. I shared the article in one of the trichotillomania facebook groups I am a part of. Later that night, an older woman posted how she had just come out to her loved one, after keeping her disorder a secret for over 40 years. I commented how amazing that was and congratulating her. She replied saying that she did it by sharing my article and that she was inspired by my openness. I have had moms of young girls who are just in the beginning of their journey with trichotillomania message me asking how they can to help and support their daughters.

There was a time, just a few short years ago, when I was beyond scared to talk to anyone about my trich, even my parents or closest friends. The shame and secrecy ate me inside. Coming out about my trichotillomania was one of the best decisions I have ever made. It changed my life and opened so many doors. Talking about it is cathartic for me.

I believe sharing our stories of mental illness is one of the most powerful and courageous things we can ever do. Education and awareness are the key components to eradicating stigma, particularly for BFRBs. I have multiple mental illnesses, but my trichotillomania is the one I talk about the most frequently. Despite being fairly common, affecting as much as 4% of the population, BFRBs are still widely unknown. The more we talk about something, the better others will understand it, and will therefore give us the treatment and acceptance that we so rightfully deserve. But it starts with us. We have to be willing to be candid and speak out with open hearts.

So I will continue to share my story -- today, awareness week, and all year round. For the woman who hid for 40 years. For the eight year old girl who just started pulling out her hair. For her mother who is in despair, searching for answers. For the fellow trichsters I've met along my journey. For my 14 year old self who felt like she was living a double life. And for my present self, who is ever changing and growing.