Thursday, October 4, 2012

i am not my mental illness.

today i'm going to blog about mental health. no amusing tweets from the debate last night, no excited pictures of my sorority getting new members and me wearing a giant parrot necklace and superman tights.

that'll come later.

this is a serious post about mental health.

this week is trichotillomania awareness week.

i've hinted numerous times that i have a mental illness. i've snidely called it "my rare and interesting mental illness" because it is rare, and it is, in fact, interesting.

my name is emily and i have trichotillomania.

me: phew. glad i got that off my chest.

i'll spare you. we call it trich. because i've had this for seven years and i can barely say it.

it's trick-oh-teel-oh-mania, by the way. if you're really trying.

so. trich. this cool public health website says that "trichotillomania is hair loss from repeated urges to pull or twist hair until it breaks off. Patients are unable to stop this behavior. it is an impulse control disorder and its causes are not clearly understood."

thanks, public health website, for enlightening us.

sooooooooooo basically what it says is this: my name is emily and i compulsively pull out my own hair.


welcome to my life.

trich affects approximately three million americans. that's three million people out there compulsively pulling out their own hair. and they have no idea why. that's the biggest question.


i started to pull out my eyebrows when i was in eighth grade. i was fourteen. around thanksgiving i just absentmindedly started to yank out my eyebrow hairs during class, especially french. my mom got me tweezers for christmas with hopes that i was just trying to sculpt them on my own, but that didn't turn out well. i put the tweezers in a drawer and never got them out again. i am still afraid of them.

by the time i finished eighth grade i didn't have eyebrows.

this doesn't seem like a big deal. until you don't have eyebrows and people stare at you and ask you about it. then you just want to die inside. then it's a big deal.

in ninth grade i got my hair cut and the stylist commented on my lack of eyebrows. i told her that i shaved them off for swimming.

right before my fifteenth birthday my mom thought that my bangs were too long and she cut them herself. she cut them too short. i spent the last week of eighth grade making up whatever stories i could for the people that asked me where my eyebrows were.

it takes a lot of effort to hide missing hair places. honestly. swimming is always a problem. sweaty bangs curl up and make your lack of eyebrows visible. getting your hair cut is torture.

and then there's always the question: what if someone sees me pulling out my hair in class? what will they think?

the ultimate question: AM I CRAZY?

my mom used to yell at me whenever i pulled out my hair. she'd tell me to "just stop."

if there's one thing i've learned about the stigma against mental illness, it's that "just stop" is one of the worst things you can ever say to someone.

we did not choose to have a mental illness. we do not enjoy the effects of mental illness.

and no, we cannot "just stop" having a mental illness.

people with trich cannot "just stop" pulling out their hair. trich is an impulse control disorder, and the more you pull, the more impulsive it becomes, making it a cycle of damage.

whenever i want to pull my hair, the part where i want to pull from gets itchy, a kind of tingly scalp itchiness. i can rub that spot all i want, i can scratch it, but nothing will make that feeling go away until i rip that hair out. to someone with trich, there is nothing more satisfying than feeling a hair detach from your head, feeling the root lift up and out, and knowing that you got that hair out of there.

there is nothing more important than pulling out your own hair.

it's hard to concentrate on anything else but the feeling of needing to pull. all you can think about is ripping out hair. it is literally the only thing you can concentrate on. it is that impulsive.

there are people out there with trich that have it a lot worse than i do. i pull from my eyebrows, the back of my head, and the top right side of my head, where i normally wear bows. there are people with trich that pull out their hair to such a degree that they are bald and have to wear wigs. there are people out there who spend an hour in the morning arranging hair carefully around a bald spot. hair is a constant worry. hair is a constant necessity.

hair is such an integral part of how we see ourselves. we all have different hairstyles. we dye our hair, we braid it, we put it up, we curl it, we straighten it, we leave it down, we put bows in it. hair is so important with how we see ourselves.

you cannot feel like a whole and happy person when you know that you destroy your own natural beauty by ripping out your hair compulsively.

my hair is one of the few things that i truly love about my appearance. i am very proud of my hair and how i maintain it. sometimes it gets to the point where i become obsessive about my hair. i have to do it every single day. i can't simply shower and leave the house without doing my hair. i always need it to look nice and presentable.

i feel like i do this because i know that the alternative is to pull all of it out and be left with nothing.

not many people know about trich. i didn't find out what trich was until i was sixteen. for two years i thought i was crazy, pulling out my own hair. when i found out what it was, i didn't know what to do. i spent a week in a furious debate with myself, wondering who i could turn to to talk about it.

to this day, i have not met anyone personally with trich.

trich is a silent disorder. people that have trich are not open about it. we don't want to be seen as crazy. i don't march around shouting "I PULL OUT MY OWN HAIR." that's not normal. it's a slow and silent disorder. we don't want anyone to know our secret struggles. we don't want anyone to know that we wear wigs.

we don't want anyone to know that we struggle with self-esteem because our hair will never be long and beautiful as long as we struggle with this disorder.

because trich is relatively unknown and the exact cause of it is unknown, there's not much funding for research. in the mental health community, we're kind of that disorder over the corner sitting quietly like, "hey guys, i'm over here affecting three percent of the population, but you can get to me when you find out exactly what causes schizophrenia."

i have silently had trichotillomania for seven years. i will have trichotillomania for the rest of my life.

i am not going to be silent anymore.

i have this illness. but i am not my illness. trich does not define me.

my name is emily and i have trichotillomania.

my family is incredibly supportive. i see a therapist and we work on ways to keep my hands busy so i don't absentmindedly pull out my hair. i keep a log of when and where i pull and what i'm thinking about when i do.

today is october fourth, 2012, and i have not pulled my hair out in seventy-five days.

for the first time in seven years, i have full eyebrows. i have no bald spots.

seventy-five days. 

i have a paper chain on my bookshelf that marks my recovery. for every day that i don't pull, i put on a paper link in the color of my choice. for every day that i pull, i put on a white link.

my chain has no white links.

trich is something that i will struggle with for the rest of my life. but i know that if i can go seventy-five days without pulling that i can do anything.

i am not my mental illness.

i have trichotillomania. but it does not have me.

seventy-five days pull free.

trichotillomania awareness week is wrapping up. tomorrow we're wearing blue. so support trichotillomania and wear blue if you want. :)


  1. So proud of you for all that you do and all that you endure on a daily basis! You are strong and I admire you for it. You go girl!