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It's 3 Times More Common Than Anorexia, So Why Haven't You Heard Of It?

Trichotillomania is a compulsive hair pulling disorder that affects 15 million people. (Anthony Delanoix/ Barn Images)MoreCloseclosemore
Trichotillomania is a compulsive hair pulling disorder that affects 15 million people. (Anthony Delanoix/ Barn Images)

I entered the hotel conference room, experiencing the familiar feeling of awe, laced with a twinge of fear. I passed strangers, smiling broadly at men and women with unusual features: missing eyebrows, bald spots on their scalps, stubbly eyelashes. After months of isolation, I was surrounded by people like me. People who pulled out their own hair.

A conference of hair pullers? Isn’t this crazy? As a matter of fact, it’s not. Fifteen million Americans pull their hair, part of a little-known psychiatric condition called trichotillomania (trick-o-TIL-o-mania). Though hair pulling is three times more common than anorexia, it remains one of the most enigmatic disorders of mental health. Few are familiar with the disorder, and even fewer understand how to treat it.

Today I pull exclusively from my scalp, and am completely bald -- I wear wigs and headscarves.

I’ve been a hair puller since I was 8 years old. I began one day when I was absentmindedly thumbing my eyebrows and found one follicle that felt out of place. I tugged. Then again, and again. An hour later, half of one eyebrow was missing. My parents and pediatrician were puzzled. No one noticed my seclusion, retreats to my closet, the swollen and blistered fingers of my hand. My doctors and parents couldn’t see something they didn’t know to look for. Finally, my mother Googled "hair loss causes" and discovered a new possibility.

Though my parents now knew the name for my disorder, they were in the dark about how to get me help. Even psychologists who were familiar with trichotillomania were unable to understand the truth: My hair pulling was uncontrollable, not a bad habit. I was not plucking my hair to get attention or to injure myself. I was plucking because it felt good and necessary — often the behavior put me in a trance. I was unaware I was doing it.

Trichotillomania disrupts the day-to-day lives of sufferers, creating feelings of intense shame and isolation. The majority of hair pullers also have some form of depression and/or anxiety disorder, and many have accompanying obsessive-compulsive disorders. Some, as I have in the past, self-mutilate; others consider suicide.

Boston has been one of the first cities to get on board with trichotillomania research. Massachusetts General Hospital features a separate trichotillomania clinic and research unit. Experts at MGH are connected to the Trichotillomania Learning Center (TLC), the only nonprofit organization in the country dedicated to supporting hair pullers. TLC hosts conferences and events throughout the country, hoping to establish a community of support for a largely alienated population. Conferences, such as the one I attended in August at the Cambridge Marriott, act as summits of leading researchers and clinicians. And they provide hope.

But the numbers remain bleak for treatment:

There are zero FDA-approved drugs for trichotillomania.

Over a century after the first diagnosed case of trichotillomania, there have been a grand total of nine medical studies for hair pulling.

Hair pulling has been neglected by psychiatry for two major reasons. First, there is a faulty perception that it has low prevalence. Because we haven’t heard of trichotillomania, and its sufferers are largely in hiding, we assume that it is rare so we cannot justify expending resources. In fact, two in 50 people are thought to have body-focused repetitive behaviors, or BFRBs, such as hair pulling, skin picking and nail biting.

Few are familiar with the disorder, and even fewer understand how to treat it.

Secondly, we often define the severity of disorders depending on how life-threatening they are, rather than how debilitating they are in day-to-day life. Sufferers of trichotillomania — your friends, family members and neighbors — struggle in silence, often believing they are the only ones in the world who do what they do. At a 10 to 20 percent remission rate, a hair pulling diagnosis likely means a lifetime condition.

I am now 24 years old and have been living with trichotillomania for almost two decades. Today I pull exclusively from my scalp, and am completely bald — I wear wigs and headscarves.

My attempts to stop plucking have been nearly constant, but, time and time again, I haven’t known where to turn for help. The research just isn’t there.

It’s time for the public to become aware of disorders like trichotillomania. I have watched too many hair pullers fight a battle that is currently unwinnable, simply because there is so little funding for treatments and a potential cure. I hope that, someday, I won’t have to wait for a conference of hair pullers to feel understood.

BFRB Awareness Week runs from Oct. 1-7. For more information, click here

The author pictured at the 2015 Trichotillomania Learning Center conference in Arlington, Virginia (Courtesy of Jillian Clark)
The author pictured at the 2015 Trichotillomania Learning Center conference in Arlington, Virginia (Courtesy of Jillian Clark)

Related:

Katie Koppel Twitter Cognoscenti contributor
Katie Koppel is a Boston-based writer and mental health activist. She is writing a memoir, “Plucked: A Memoir of Hiding.”

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