“I didn’t know it had a name”

Raise your hand if you’ve been told that your hair pulling is just a bad habit. Okay put your hand down. 

Raise your hand if you’ve been told that your hair pulling is something you’ll grow out of. Okay put your hand down. 

Raise your hand if it took years to find out that your hair pulling had a name, trichotillomania. Okay put your hand down. 

I know I can’t see you but I’m assuming you raised your hand at some point. Why? Because I’ve received hundreds of comments saying all of those things. Most people don’t know that they have trichotillomania. I have a big problem with that.

Aneela, from HabitAware, often says, “Trichotillomania is the most common disorder no one has ever heard of.” And she is spot on! Most people have heard of hair pulling because of the common saying, “That makes me want to pull my hair out!” but they don’t realize that hair pulling is an actual disorder affecting millions of people all over the world. 

I’m grateful that I was diagnosed with trichotillomania very early on in my journey. I feel like I’ve always known it had a name—not that it made me feel any better but I knew it was a disorder so I had access to things that others didn’t. My parents found TLC for BFRBs (back then it was known as The Trichotillomania Learning Center) and I was enrolled in trichotillomania research studies.

I remember hearing Christina Pearson, the founder of TLC for BFRBs, speak at a conference about the work she had done so that insurance companies would cover the care of those seeking treatment for their trichotillomania. Before that, it wasn’t covered!

So imagine this: You’re pulling your hair out uncontrollably and seeking help. Your parents or trusted adults are telling you it’s something you’ll grow out of or something that you can stop if you just try hard enough. They don’t look into it. You live your life feeling like you’re the only “weird” one in the world who does this. And it isn’t until you do your own research, years later, that you find out it has a name. 

Does that sound familiar?

The reason I have such a big problem with this (I feel like anyone would!) is because there are resources that can change lives that people are missing out on because they don’t know they’re there! And it’s not anyone’s fault—you don’t know what you don’t know but it’s sad! There are other people just like you! There's a community! There’s support!

In a perfect world there would be checkpoints so that eventually (but quickly) you’d be able to find the name. Now that the internet is so easily accessible it could look something like this: 

But I do understand that this may not happen. So what can we do? Well, let’s keep talking! Let’s keep spreading awareness in any way that we can. It doesn’t have to be making videos on the internet, it can be sharing with close friends or family, or with colleagues. It can be reposting things on social media. It can be sharing movies/shows/books that have characters with trichotillomania. The possibilities are endless!

No one should have to wait their whole life to learn the name of their behavior—and thanks to all of the trichotillomania advocates out there, they won’t have to. 

Boston 2023