Day 2: My Trichotillomania Story - Part I

Update 1/19/09: Please check out my post with Austin Trichotillomania Resources.

The truth is that I can't believe I'm actually writing this. As of a few months ago Trichotillomania was something that I completely ignored. I guess I never really told anyone about it because it was embarrassing, and then in addition to that I barely thought about it myself. Up until this point, it was something that I had revealed to very few people in my life--my family, my husband and a few friends.

I have so much to say about this that I have broken it up into two parts. I will post the second half tomorrow. This first half is all about how my own case started and how it affected me. I think other people with the disorder will know exactly what I'm talking about. I'm happy to share it with people who don't have Trichotillomania so that you can somehow understand what this is and how it manifests. And for those who do have Trichotillomania, this is mostly to let you know...

Part I: You are not alone!

The first time I recall pulling out my own hair was when I was in 1st or 2nd grade. I was laying in bed one night, and I started touching my hair and feeling my scalp. I noticed that some of the hairs were shorter and sharper than the others. I had this overwhelming desire to get rid of them, I imagined that they were "bad hairs" and that they would look wrong, so I started pulling them out. But the hairs I wanted to get rid of were the short ones, the sharp ones, but I couldn't get to them. I think that this obsession lasted for a few months. My mother noticed a bald spot on the top of my head and took me to the doctor. I had also picked at the skin at the top of my head, which caused scabbing. The doctor saw the scabbing and misdiagnosed me with psoriasis, prescribing me a special shampoo that smelled like tar. I don't remember the exact point, but I magically stopped both of these behaviors, both the hair pulling and the scalp picking.

Trichotillomania didn't begin again for me until the summer before I left for the university. I was generally unaffected by Trichotillomania during the beginning of my adolescence. For many people, its onset begins with puberty, so I'm really not sure why it began for me later. The only thing that I can really attribute to its full-blown onset was that it was that I was really terrified of moving to a new place where I knew literally no one, and I was also making a concerted effort to control my emotions.

I think this may be a large key for me-- attempting to "control" my emotions. Prior to the onset of Trichotillomania I was a big crier. I really hated this about myself. When I would get upset in school I would go to the bathroom and cry. I would cry for hours alone in my room, just releasing bad feelings in general. I cried to my boyfriend at the time, something I think he got tired of hearing me do. He was the one who suggested that I learn to control it. I also was very artistic in high school and channeled all of my negative emotions into paintings, drawings and poetry. And for some reason, once I started to control my emotions and found myself too busy at the University to do my art.

I also entered Cornell scared to death that I wasn't actually smart enough to be there and that I was going to be "found out" and kicked out (or fail out). I've come to learn that many women, even the most successful experience this "impostor syndrome." It honestly created fears for me that went deep down. I'm still in awe that I graduated from that place. I think that this also contributed to the onset of Trichotillomania for me.

I have never been so stressed as I was during my undergraduate years at Cornell. I worked 2 part time jobs, was always the leader of the clubs I was in, double-majored, and tried to be social on top of all of that. I loved the time that I spent there to death, but my pulling was at its worst. Having a roommate helped me control my hair pulling, but it didn't get rid of it either. When I moved into my own room after my first two years I was honestly terrified that I would go bald.

Naturally, both of my roommates noticed my hair pulling, and actually talked to me about it. I was so ashamed and claimed that I had no idea what they were talking about. My freshman year roommate said that it was cute. My sophomore year roommate said, "Are you a hair twirler?"
I replied, "What do you mean?"
"Well, my roommate at boarding school couldn't stop twirling her hair and would pull it out. She ended up having all these bald spots. You seem to twirl your hair, too."

Hair-pulling always seemed to happen around these same times: 1) When I'm on the computer 2) When I'm watching T.V. 3) When I'm alone 4) When I'm awake late a night 5) When I'm reading 6) When I'm concentrating really hard on something, like writing a paper
I also attribute these emotions to my pulling: 1) Boredom 2) Anxiety 3) Nervousness 4) Feeling that I'm not 'good enough' 5) Anger

At the time I had no idea that what I did was actually considered a disorder, a type of mental illness. I would just religiously sweep my room, doing my best to hide the bunches of hair that accumulated on the ground.

I also had to learn to deal with my "new hair" a patching, thinning, stringy mess that I wasn't at all used to having. I tried using hair products to hide the smaller hairs that were growing back, but I realized that having something sticky in my hair made the pulling worse. I tried dyeing it darker, lighter to make it look more normal. Nothing seemed to work. I really missed my old hair, the hair I had always had.

I think that's the other really devastating thing about Trichotillomania, losing something that is supposed to be beautiful.

I always had really gorgeous hair before this disorder surfaced. It was thick, but not too thick. My hair stylists always commented that it was "a joy" to cut my hair, that it was so healthy. I could french braid it on my own, put it up in a bun, curl it. These are things I can't do anymore. Whenever people complimented me it was always on my hair, "What shampoo do you use?" people would ask me. I always thought that my hair was my best asset, really the thing that set me apart. And then, one day, I just began destroying it!

My case of Trichotillomania never has been so severe that I have pulled out all of my hair. There are many sufferers who have it much worse, and so I am thankful for the fact that my own case has just been moderate. For the most part, people who meet me now don't really notice anything except for maybe the short hairs I have growing sporadically and that I have generally thin hair. People who knew me before often ask me if I have cut too many layers in my hair. My mom always commented that I needed a haircut, that my hair was getting stringy. But no one could really put their finger on it.

Somehow, though, when I went abroad to Santiago, Chile the fall semester of my junior year, my hair pulling got a lot better. I still pulled alone in my room, at night, on my computer, but it wasn't as frequent as it was at Cornell. A lot of my hair began to grow back. People actually began to compliment me on my hair again. I think this had to do with many things: first, I eliminated a lot of negativity in my life when I went abroad (my ex-boyfriend and other assorted relationship issues). I spent less time sitting alone in front of books and was instead out and about, exploring a new city. It was in a much less competitive environment than Cornell. I also met O., my husband, who really helped me feel connected (psychology term: attached) to another person. I was also, for the first time, not involved in 5 million activities. I was relaxed, a lot less stressed...happy!

Unfortunately, returning to Cornell that spring semester meant that Trichotillomania returned, full-fledged. Yet, when I returned to Chile the following summer for a three-month internship, my hair pulling actually stopped completely. I was working full-time at LAN airline's bilingual magazine in a newsroom with my editor sitting right across from me. I didn't dare pull out my hair in front of her, or on the bus, or in the metro. At home, my husband and I didn't have internet, didn't have television. I didn't read that summer at all. But, my life, at home at least was never like that, and once I returned my three-months of good hair growth were gone in a flash!

Finally, at the end of my fall semester my senior year I started seeing a psychologist about my hair pulling. I decided I was going to take charge, actually attempt to stop with professional help. However, it was pretty much a short-lived feeling. My psychologist made me feel really uncomfortable. I felt like she was constantly trying to screen me for ADD, seeing if I could follow oral directions, asking me about my organizational habits. (I later found out she was an ADD specialist.) I didn't want help for ADD, I wanted help for hair-pulling! She told me that I had a chemical problem that antidepressants would solve it. (This is something I knew wasn't true.) She also suggested that I break up with O., that he was the source of most of my stress. I stopped going. I did make it to a psychiatrist to whom she referred me, who pretty much said, "You're not depressed, I'm not giving you antidepressants. You are too stressed, do some yoga. Here, have some Xanax." And of course, the Xanax didn't help my hair pulling. It did however make me feel a lot less affected by stress. I remember when I started it, I was in Chile. Oscar's ex-girlfriend had just called him screaming about their daughter. When he was done with his phone call, I said, "Darling. I think that you should have her come over here and I'm going to make her some chocolate chips cookies. She just needs my cookies and then we can all be friends!" He responded, "ARE YOU ON SOMETHING?"

Once I graduated and moved to Chile, I was hopeful that my hair-pulling would stop again, magically on its own. Unfortunately, when I started having trouble finding jobs and spent most of my days in my apartment, alone, surfing the internet on my computer, pulling was at another high peak. I had literally no academic stress at this point, but I finally experienced the stress of actually MOVING to another country in a more permanent sense. I also had issues with my husband's family, my husband's ex-girlfriend, the list went on and on. In Chile, I decided that Trichotillomania was simply always going to be a part of my life, that there wasn't anything I could do to stop it. I stopped thinking about it. Stopped trying to stop. I tried to accept my hair as it was.

And that brings me up to today, literally up to August, 2008. Prior to now, I had completely given up. I stopped telling people about it because it didn't seem to change anything. I just ignored it.

I'm ending this here, because I think it's a good stopping point. Part II, for tomorrow, will explain how my outlook has changed and how I've actually managed to stop pulling my out my hair!