For two years now, I’ve been hiding.
I’ve been keeping a huge part of my life hidden not only from my friends and family but also from myself. I avoided class, hanging out with friends, parties, and going to the gym. I looked down every time I faced a mirror. I avoided my own reflection.
I have trichotillomania.
In honor of May being Mental Health Awareness Month, I decided to share my story as one more step to help end the stigma of mental illness.
Trichotillomania, or “trich” for short, is a BFRB (Body-Focused Repetitive Behavior) that causes an individual to pull out their own hair.
BFRBs include but are not limited to trichotillomania (hair pulling), dermatillomania (skin picking), nail-biting. The urges to continue the behavior are recurrent and irresistible. While there is no definite cause of any of the BFRBs, research in the field continues.
There is also currently no known cure for any of the BFRBs yet.
I began compulsively pulling out my hair after a bad haircut in August of 2016.
Shortly after, my hair began thinning, and I later started covering up my bald patches and uneven hair with hats, headbands, and ponytails. It wasn’t until January of 2017 that I realized this was a problem and I needed professional help.
I was diagnosed with alopecia by a pediatrician at first, but we knew that wasn't it– I pulled to relieve tension. After seeing a psychiatrist who was familiar with OCD Related Disorders, we were introduced to the term Trichotillomania.
We have tried and are still trying medications, supplements, cognitive behavioral therapy, habit-reversal therapy, diet changes, all the fidget toys, every shampoo and conditioner fellow trichsters suggested, psychiatrists, psychologists, oils, old-school band-aids on the fingers, meditation, exercise, hypnosis, high-tech bracelets that alerted when I touched my hair, and but they proved to provide little if any changes. I even participated in clinical trials for research in the field, however, everyone is different.
Certain treatments work for some people, while others try new things every day.
Trich is not so uncommon. According to the National Institutes of Health around 2-4% of the world is estimated to have trichotillomania. Megan Fox, Justin Timberlake, Katy Perry, Olivia Munn, are only some celebrities who have, “come out of the trich closet,” opening up about their hair-pulling disorders in interviews.
Beneath the visible hair loss, trich affects the emotional and mental state of a person. Pullers often feel shame or guilt due to their uncontrollable behaviors, which lead to isolation.
By isolating myself, I felt alone, and only got worse. I stopped making YouTube videos and going to Zumba because I couldn’t stand to see the damage I had done to myself both on video and in the mirror of the group fitness room.
For a long time, I truly hated myself. I felt like a failure because I couldn’t stop no matter what we tried. I avoided mirrors because I hated seeing myself. I felt constant anger that I caused myself to look the way I did. I blamed myself for everything. I cried myself to sleep every night.
I felt hopeless.
I can’t wrap my mind around the countless hours I spent in my dark closet curled up in a corner just pulling my hair out. All the nights I stayed up searching for the strands that didn’t feel “right” or “belong there” slowly began leading me to a dark place. I completely lost control.
In October of 2017, I was hospitalized.
Trichotillomania hurt my relationships. I lost my best friend. It hurt my family. My parents often got in fights about treatment plans, what to say/not say to me, and were simply frustrated. Sure, they still argue about my disorder, but my acceptance of it has given them much relief.
No, I can’t “just stop.” No, it’s not self-harm. If anything, it makes me feel good. I actually ENJOY pulling out my hair! It is later that I regret my decisions and feel poorly about myself. My biggest goal is to reduce or stop my pulling, and I work extremely hard each day by combining my coping skills, supplements, and diet to have a “pull-free” day. Some days I am able to accomplish that, while others I pull a few strands, and sometimes I have a rough day controlling the urges and pull between 300-600 strands.
Right after my diagnosis, I found out about The TLC Foundation for Body-Focused Repetitive Behaviors. Through there, I was able to gain much insight into the disorder and access many resources.
I attended a local one-day workshop in New York City in November of 2017. It was unbelievable meeting people just like me. I was inspired to do more local work for BFRB support in my area, so I created a support group in Connecticut. As a support group leader, I am responsible for organizing two meetings each month, bringing new information to my group members, encourage engaging conversations, and provide information for local resources such as therapists and salons trained by the TLC Foundation.
Although I found out about The TLC Foundation for BFRBs shortly after my diagnosis, I wasn’t able to attend their annual conference until this year.
On April 20, I traveled to San Francisco for the 25th Annual BFRB Conference. Surrounded by 500 people who pull, pick, and/or support, I met hundreds of people as young as eight who understood me more than any therapist or non-puller friend would ever. I am simply at a loss for words to describe the experience. Surrounded by all these pickers and pullers who shared my struggles and triumphs, I felt right at home.
For a long time, I hid. I thought no one understood me. After a long day at the conference, I returned to my room and thought “there is nothing wrong with me.” For years, I blamed and isolated myself with shame and guilt due to the notion that something was “wrong” with me. Never in a million years would I have thought this would be my mindset. After the teen/young adult session one night, we all hugged each other and shed some tears. I never felt such a connection in my life. These people pulled. These people felt my pain, shared my struggles, had the same relationship issues, and accepted me. It was incredible. It was then and there that I knew this was my second family.
Trich is such a small part of who I am. I am a daughter, friend, writer, human to the best dog, fencer, bubble tea lover, and so much more.
Image Courtesy of Writer
During the conference, many shared their passions and how finding your passion is important in dealing with BFRBs. With trich, there is no standard treatment, so it’s important to find your own unique way of coping. Some ride horses and some draw. What was my talent? What hobby could I pick up? The answer was right in front of me all along. My existing love for social media and writing could easily be intertwined to create my passion. As a social media influencer and writer, I think letting our voices be heard and raising BFRB awareness is mine.
I want to share my story for all the “18-year-old Ambers” out there that don’t know others like them exist. We are in this together. You are not alone. You are not worth any less. Your hair and control over your pulling don’t define you.
Pulling out my hair does not make me “gross”, it doesn’t make me a “freak”, and it sure doesn’t make me a “weak person”. Believe me, I’ve heard it all. Yes, I pull out my hair. No, I don’t beat myself up over it anymore. I accept my trich and myself completely. It has taken me a long time to get here, but I love it.
Whether you pull your hair out, bite your nails, pick your skin, or merely love someone who struggles with body-focused repetitive behaviors, you are not alone in your battle. Let’s break the stigma one brave awareness-spreading story at a time.
For more information on BFRBs, please visit The TLC Foundation for Body-Focused Repetitive Behaviors.