There's one rare word, a very hard-to-pronounce word with many tongue-twisting syllables, that has affected me my whole life. It's a secret I hardly ever share with anyone: trichotillomania.
Most people have never heard this term, even if they've seen the symptoms. But as far back as I can remember, I've dealt with trichotillomania, a psychological disorder defined as “a compulsive desire to pull out one's hair.”
It started in elementary school, when I was that girl in class always twirling her hair. It was just something I did, and it became a caricature of me.
But as I grew older, the twirling developed into actually pulling on my hair. It first happened in college, when I was particularly stressed due to a family medical situation, an uncertain living situation, and the pressures of finals.
I’ll never forget that moment of looking in the mirror and seeing where I had been pulling during this stressful time. The bubble of denial was suddenly burst. What was happening? Was I crazy? I didn't know what to do other than brush my long hair over it and hide the short locks until they grew out.
In fact, I didn’t have the language for what I was experiencing until I was 18 and my friend gave me an issue of Psychology Today. The cover story was on trichotillomania. I read every word of that article, and from that day forward I knew what I had, and that I wasn’t alone.
What's It Really Like To Live With Trichotillomania
According to the Trichotillomania Learning Center, “People of all ages, genders, ethnicities, nationalities, and socio-economic backgrounds have trichotillomania." It's estimated to affect between 2 and 4 percent of the population, and up to 90 percent of reported cases in adults are women. For some, trichotillomania manifests as pulling out one’s eyebrows and eyelashes.
I’ve never chosen to be formally diagnosed with trichotillomania, but I constantly play with and twirl my hair, pull at split ends, and pick out kinky hairs. For those of us who like to have everything in a particular fashion, it's only natural that any kinky or short hairs must go.
Some may think this sounds painful. But to me, it's very soothing and calming.
Often times, trichotillomania waxes and wanes and can suddenly appear and then cease at any time in a person’s life. I’m now in my early thirties, and its decreasing presence in my life has been a blessing. It usually only appears during times of stress. Luckily, I was blessed with a thick head of hair, so I'm usually able to hide the results. To the outside world, I simply appear as though I like to play and toss my hair around.
Looking back, here are the three lessons trichotillomania has taught me:
1. I have the right to be me.
Nearly all of my life, I’ve been in hiding. Only my closest friends knew about my disorder. Until today, I never came out of the closet to the rest of the world.
Why now? I'm tired of having to hide who I am. Mental illness falls over a large spectrum, and I have the right to exist on that spectrum and still hold my head high. As a community, we have the right to thrive without shame or stigma.
If I had diabetes or any other physical ailment, would I be so compelled to keep it a secret? Why is it that mental ailments are perceived differently?
2. Accept your flaws and no one can use them against you.
Some years ago, I went to a new hairstylist for a keratin straightening treatment. While giving me the treatment, he abruptly asked me if I had recently had gum stuck in my hair. He had found the clump of short hairs hidden behind the thickness of my hair. I responded an embarrassed “no” feeling both exposed and ashamed. He kept prodding me about the short hairs, until I simply stopped responding.
After that incident with the hairstylist, there was a period of time where whenever anyone new went near my hair, I would feel my heartbeat rise and a surge of anxiety.
I'll never forget the stranger who first liberated me from this fear. I was standing by the train platform when a middle-aged man noticed me picking at my hair. He looked me in the eye then turned around while exposing a bald circular patch in his full head of hair. He was showing me that he was a fellow sufferer of trichotillomania. I suddenly had permission to stand proud in my skin.
As time has gone on, I’ve come to realize the truth in Eleanor Roosevelt’s words: “No one can make you feel inferior without your consent." The moment that I began to embrace all aspects of myself — even my perfect imperfections — is the moment that other people lost their ability to take away my dignity.
3. Honor what your body is telling you.
I don’t always notice right away when I’m stressed. In hindsight, the extent to which I was pulling at my hair was a good indicator for what I needed to know about my inner world at that time in my life. I have learned to listen to my body in this way. Do I need to schedule in some “me” time? Is a vacation needed?
Having to deal with trichotillomania has taught me to listen to the signs and signals. I know when I need to meditate, go to a yoga class, or simply sip a cup of tea to soothing music.
Maybe you don't have trichotillomania, but you likely have other manifestations of your inner self telling you when enough is enough.
We all have our cracks. You get to define who you are and what you do with the "cracks" of your personality, body, or being. Cracks are what make us gloriously human. I'm now proud to acknowledge who I am.