Monday, October 19, 2009

Do you know trichotillomania?

Every year or so, I post about some information or patterns regarding this disorder that I have (that some people like to argue I have not been diagnosed therefore I do not have it) and this is my re-welcome entry into the subject.
I have trichotillomania. It is a psychological disorder that causes one to compulsively pull out body hairs. It is a compulsion, and is described as a type of OCD, but more specifically as an impulse control disorder. There are many other ICDs out there that people are more familiar with, such as nail biting, skin picking and non-tourette's related ticks. It is not as uncommon as many sufferers believe.

My amazing friend, Rachelle,the awesome book publicist, alerted me of a book called "Marni" which is part of a series of books called Louder than Words-a series of books by teenaged girls for teenaged girls. The story is written by Marni Bates and she suffers with trich. She is 19 years old.

The book, while a good read, is not highly focused on Marni's development of trich or struggles with it. It is mostly about her troubled family life. She doesn't begin to mention trich until page 93. In this, I was a little disappointed. I want to read or hear about other people's triggers and trials because I want to come to understand what makes this tick happen and, hopefully, how it can be stopped.
Marni does describe when she first started pulling her hair and where (specifically, her eyebrows at first) and by page 100, she describes quite the annoying habit that I share with her: the desire to pull other people's disheveled facial hairs! Javonda and Jeff know all too well that I may be staring at an out of place eyebrow hair or a criss-crossed eyelash while I'm supposed to be participating in a conversation. That is sometimes more embarrassing than the desire to pull my own hair.
Marni also mentions her discovery of tweezers-a harmless invention that can be the ultimate tool of destruction for someone with trich. I started pulling the hair around my face when I was eight, but stopped a few months later, only to have the desire arise in the eighth grade. I would pull eyelashes out by the chunk and this annoyed me, as I was only after one-the "bad" one. I soon discovered what precision I could receive by using tweezers but this ultimately fueled my pulling instead of restricting it. I didn't notice how serious it was until high school, when I saw a picture of myself and a friend and there was a gap in the thick black lashes on my right eye. I had been walking around like this and I never realized it. For poor Marni, the damage to her face was obvious in the beginning, in middle school.
It is a short book and a quick read and I would recommend it to anyone who is suffering from trich or knows someone who is. Just knowing how many people are out there that have this disorder can ease the stress of doing it. Part of the destructive cycle in trich is the shame that we feel from thinking that we are alone in experiencing this, and the shame creates stress which causes more pulling. Awful cycle, no?

My sister also suffers from very mild trich, and she has been able to get it more under control than I can. The hardest thing to deal with about having trich is having non-compulsive people telling you to just STOP. Please, if you know someone with a compulsion, do not tell them to stop, because they can't. And the embarrassment of your expectation makes it worse. When I was a child, my dad would put his dirty gym socks on my hands to keep me from pulling my hair. This, more than having someone slap my hand or yell at me, helped me to keep my hands out of my hair for a longer period of time. But clearly, the desire is still there.

One of the most relevant things that Marni says in her book is that she realized that pulling her hair cleared her mind; she was able to be free from all of the worries that swam in her mind throughout her day. This is more true than anyone may realize. I didn't realize it. I have been told that I am pulling my hair and I wasn't even aware of it. Marni was told that some people even pull in their sleep. Until I read her words, I didn't realize that pulling my hair made me concentrate. I have been trying to find my trigger for a long time now; was it stress? was it work? was it sadness? It may very well be that I need to concentrate and the only way to quiet my mind is to occupy the part that I'm not using. I pulled my hair while watching "The Time Traveler's Wife". If you saw the movie, you'd understand! So much going on that it takes a lot of effort to watch, much less care about the movie.

Reading Marni's book has been a huge revelation for me. While I try to journal every time I pull, it hadn't revealed some clear cut reason for doing it. This most recent time I had been pull free since the viewing of the above mentioned film until I started working on a project for a job I'd applied for. Intense concentration was needed. My hair was not. I thought it was odd that I didn't have the tingling sensation that usually causes me to pull and now I understand why. It's not my scalp, or stress, that causes me to pluck out those kinky black hairs, one by one, by the root. It's the need to quiet that incessant hum inside my brain that keeps me awake at night, that makes my mind wander while reading, forcing me to read and re-read the same lines over and over again, or while someone is talking to me about something that I have no personal investments in. I can now put the pieces together. I can now work on a solution, or at least an alternative. The only other time I am so clear headed is when I walk. One mile, two miles, three miles. If I can replicate this free-mindedness, I may have a way to spare my hair (and eyelashes), and recover from a little known disorder with even fewer known cures.

Marni's book is available on Amazon and there's more info about her on the Louder than Words site.
All of my posts about my trich are here

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