I Have Trichotillomania
I remember exactly the first time I ever pulled out my hair. I was 13, and my uncle was just admitted into the hospital…again. One of my distant cousins came to our house to stay with me at home while my uncle recovered. The first night, we were watching the musical “RENT” on the TV in my uncle’s room and I remember putting my hand up to my scalp and feeling my hair. I don’t know why I did it or if I was even fully aware I was doing it at the time, but I found a piece that felt different from the others and pulled it. I examined it, and then decided to keep going, and going, and going. Fast forward two years later and I have to cut all my hair off. Yay me.
Throughout my teen years, I was constantly embarrassed and ashamed by the state of my hair. I once had beautiful, long, shiny brown hair and in two short years, it was almost all gone. I had to start wearing hats. Every. Single. Day. There was no way I was going into high school with bald spots on my head. I thought I was crazy, why couldn’t I stop pulling out my hair? I could see what it was doing to me and my appearance, but I still couldn’t stop. And the thing is, no one knew. Of course people could see that I was losing my hair, but I was so good at hiding my pulling that everyone in my family thought it was a medical issue. (Or just didn’t want to bring it up.) Kids at school started looking at me funny and whispering, “Does she have cancer?” It was awful. If only I knew back then what I know now. That there is a name for it, that I am not the only one in the world doing this, and that I am not crazy.
Trichotillomania. When most people hear that word they have no idea what it is or what it means. Lucky them. For me, it’s a nightmare. My worst enemy. An overwhelming urge to pull out my hair. I’m one of the “lucky” 1–2% of the population that has this disorder. In the Diagnostic and Statistical Manual of Mental Disorders 5th ed, (a mouthful, I know), DSM-5 for short, trichotillomania is listed in the chapter of OCD related disorders. No one really knows exactly why or how this disorder is developed, but the best guess is a mixture of genes, trauma, environment, anxiety, etc. Fun.
Trichotillomania is not one of the mental disorders/illnesses that’s in the spotlight. No one knows about it. When I developed it I was about 13 and it wasn’t until I was 19 years old that I actually knew there was a name for it. That I wasn’t the only one. Knowing this could’ve saved me from a lot of shame and embarrassment. I had felt as though I had no one to talk about this, and I kind of didn’t. When I’d try to talk to someone they would say, “Well, just don’t pull your hair,” and “Just stop.” It’s not that easy. That’s a big misconception about people with trichotillomania, we can’t just stop. A lot of the time we don’t even realize we’re pulling and once we do, there’s like a mental block that just won’t let you put your hand down.
I didn’t realize how big a part hair played in appearance and how people view you until I developed trich. I thought that since everyone at school and in my family has known me for years, a little hair loss won’t change their opinions about me. But I was wrong. It changes a lot. There’s weird looks and whispers and it’s just different. It made me feel like less of a person, less worthy. Now I know that isn’t true. Trichotillomania isn’t something I asked for, but it also isn’t a total curse. It forced me to find things to learn to love about myself, things that aren’t external. It also inspired me to find beauty in other places of myself and others; the eyes, laughs, smiles, etc. Knowing that I wasn’t alone and that this urge to pull has a name helped change my life.
Sadly, there is no magical cure or treatment for trichotillomania. For most of us, it’s something we will have to deal with forever. Sometimes the urges will go away for a couple weeks, months, even years! But usually, at some point, they will come back. All we can do is make sure we are best prepared to work through it. Therapy, journaling, talking about it to a trusted friend or family member can help make a lot of difference. For me personally, I’ve learned that my urges are brought on by anxiety and boredom. What helps me most is talking to my therapist and keeping busy by doing something with my hands. I love to paint and write and try to do those things when I get my urges. There are also support groups to find online or even in person for people that struggle with trichotillomania!
Knowing all of this when I was 13 would’ve probably saved a lot me a lot of tears but, at least I know now. The more we speak out about trichotillomania, the more young women and men won’t have to go through it alone. By talking about it we can help ease the shame that surrounds it and live confidently. I still struggle with the urges but I am no longer ashamed or embarassed. I’ve learned to live my life freely and not let this hold me back anymore. The most important thing is to know you are not alone and you are NOT crazy.
