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What You Need to Know About Trichotillomania and Other BFRBs

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Editor's Note

If you struggle with a body-focused repetitive behavior, the following post could be potentially triggering. You can find resources at The TLC Foundation for Body-Focused Repetitive Behaviors.

I don’t have an exact memory of the very first time I plucked an eyelash from my eyelid.

I don’t remember the specific circumstances surrounding that pivotal moment, nor the precise feelings stirring so intensely within me that they caused an overwhelming urge so unbearable I let my hand slip upwards towards my face without my own permission. I don’t remember how I felt after the first time I did it, nor do I remember the first time my mother noticed I had plucked far too many and decided the best corrective action was punishment.

I don’t remember the details of how or when this behavior began, but truth be told, I also don’t remember a time when these urges haven’t been an integral part of my daily reality.

I’m 23 years old and have battled something called “trichotillomania” for as long as I can possibly remember.

“Trichotillomania” — that’s a mouthful, isn’t it?

That seven-syllable term describes the mental illness that causes me to have uncontrollable urges to pull out my own hair, resulting in baldness, debilitating emotional distress and a slew of other physical and mental health side effects. In the nearly 20 years I have been pulling my hair out, I have experimented with pulling from every part of my body in which hair can be found — Yes, I really do mean everywhere — though my personal kryptonite are my eyelashes and eyebrows. Underneath the thick layers of face makeup I wear daily to cover up my deepest insecurity lies a hair follicle graveyard on my skin, created courtesy of years of pulling out individual lashes and brows by their root, one by one, over and over and over… sometimes for hours on end, happening mindlessly during what are called “pulling episodes.”

I do it in the car while driving. I do it at my work desk. I do it sitting down to dinner. I do it in the movie theatre. I even do it in my sleep.

Are you cringing right now? I don’t blame you. I cringe at the reality I still do this to myself after nearly 20 years, and still have not managed to overcome it despite years of countless efforts, medications, homeopathic remedies and different therapies.

Trichotillomania (or “trich” for short) is one of a group of disorders on the obsessive-compulsive disorder (OCD) spectrum known as “body-focused repetitive behaviors” (BFRBs). BFRBs not only include my hair pulling, but also compulsive skin picking (dermatillomania) and compulsive nail biting (onychophagia). Now, before you think to yourself, “Oh no! I pop pimples and bite my nails all the time! Do I have a BFRB,” let me clarify.

As with any diagnosable disorder that can be found in the DSM, these behaviors listed above are classified as “compulsive” for a reason — they are not merely “bad habits,” and the disorder affects somewhere around 1 to 3 percent of the U.S. population, as researchers have now estimated. Unfortunately, the feeling of being part of this minute statistic makes those of us who experience it feel anything but “one in a million.”

Compulsions like my hair pulling go beyond the realm of “quirky” personality traits or “that habit you just can’t kick.” People living with dermatillomania pick at their skin to the point of causing constant skin infections, abscesses and permanent scarring. Those living with onychaphagia may bite their nails down past their roots, not stopping when it causes bleeding or pain, leading to inflammation and risk of severe tissue damage. And those living with trichotillomania, like me, may pull out their hair until their skin is raw underneath, leaving bald patches and sometimes even consuming the hair as part of the compulsion.

But trichotillomania doesn’t stop at just the physical health effects:

I don’t ever leave the house or let anyone besides my husband see me without makeup on.

I don’t go swimming out of fear that “my face will wash off.”

I strategically position myself in photos straight-on so no one notices the bald spots from a side angle.

I tend to wear my hair down to cover up parts of my face and make the condition less noticeable.

I take deliberate steps away from people who begin to talk to me too close so they can’t see my eyelids.

I don’t let my husband touch my face or pull me into a bear-hug because he may smudge my makeup in the process.

I spend all day with a little mirror at my desk and in my purse so I can do frequent checks of my face to make sure everything is in order.

I spend every second of every minute of every hour thinking about how I look, if people are looking at me and how to hide it. Every. Single. Day.

I lose hours of sleep at night obsessing over nearly two decades of not being able to overcome this thing I do.

But why? That’s the question you’re dying to know, right? What makes us do this to ourselves? If it causes such distress, why do we continue? Why are we unable to “just stop?”

Psychologists and researchers have pointed to a number of factors that can influence the onset of BFRBs like trichotillomania, but the most fundamental explanation is that although we are fully cognitive of the fact these behaviors are detrimental to us, they still bring a bittersweet relief and comfort to us. They act as readily-available coping mechanisms my body and brain decided to implement long ago for a variety of situations. And they have become reflex-like compulsions that are nearly impossible to stop in their tracks once our brains have decided it’s time to pull.

Feeling frustrated or angry? Pull until you calm down.

Feeling tired and can’t sleep? Pull until you doze off.

Feeling bored in front of the TV? Pull to keep your hands busy.

Feeling overwhelmed, anxious, or stressed? Pull to stay calm while you think deeply.

Feeling absolutely nothing at all? Pull for no reason, just because your body compels you to.

Everyone with trich has their own triggers, their own reasons, their own kryptonite-spots, their own stories. But something we all have in common is the majority of friends and family around us either have no idea what this disorder is or that it even exists.

Trichotillomania is an extremely isolating condition.

I was 14 before I even knew this disorder had a name; that other people live with it; that other people have even overcame it. Before then, I spent my childhood and early teen years believing I was the only one, that pulling my hair was just something I did; something that was wrong with me; something that was my fault; something that made me “crazy,” even. It wasn’t until my mother began studying to become a nurse that she read, completely by chance, about a rare disorder that compelled people to pull their hair out, and it sounded uncomfortably familiar to what she had witnessed for so many years in her daughter. After I learned there was a name for what I had, I began to realize just how blatantly unaware everyone in my world seemed to be about it.

I remember being in AP Psychology as a high school senior, handing in a report on Trichotillomania to my psychology professor at the time, who upon taking one look at the photos of the effects of this disorder, exclaimed “gross!” and questioned me on why I would choose to turn in a report on this particular disorder… Ouch. A professor of psychology with a doctorate at the time didn’t even have knowledge of this thing I was battling every day of my life, nor did she know how to react to it.

My social world became a little smaller on that day — debilitated and pushed even further into isolation by the fact that not only did people seem to not know what I was struggling with, but they didn’t accept it as worthy of compassion.

“Gross,” she had said.

Can you imagine someone taking one look at a cancer survivor who has lost their hair and exclaiming “gross” at them? No. It’s unimaginable. And it’s because knowledge of cancer, like many other devastating diseases, and the effects it has on a person’s life and the lives of those who love them, is all widely experienced and understood across the world. We feel for it. Our hearts break for it. We know it hits close to home for so many of us.

Not so with trich.

Trich not only lacks awareness and understanding, but often empathy and support.

For those of us who have ever been asked: “Oh my gosh, where are your eyelashes?” “Are you wearing a wig?” “How do you draw your eyebrows on like that?”

For those of us who have ever caught someone staring at the bald spots on our heads or faces, knowing they are just wondering and holding their tongue, before blushing and hiding ourselves from their sight.

For those of us who have ever sunk a little lower in our seats and held back tears as we overhear a frustrated friend exclaim “Ugh! This makes me want to pull my hair out!”

You are not alone. You are not gross. You are not weak or without willpower. You are not an oddity. I stand with you. I empathize with your journey. I celebrate your successes in overcoming it. I encourage you in your efforts to heal.

But for those who are learning about this “trichotillomania” thing for perhaps the first time as you read this, we ask for your understanding. We ask for your tenderness and grace when commenting on it or asking us questions. We ask for your discretion and moments of pause before exclaiming something that may ring forever in our minds, becoming a repeated trigger for us to continue the cycle.

We ask that when you absentmindedly use the phrase “I want to pull my hair out,” you think for a moment about those of us who actually do, and consider the weight of your words.

We ask for your support. We ask for you to be cheerleaders in our corner. We ask for you to simply be aware and go on to raise more awareness.

We ask you to stand with us, too.

Photo by Mikail Duran on Unsplash

Originally published: November 19, 2018
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