Sure, you’ve heard of anorexia, OCD, depression, and anxiety; they’re all common mental illnesses. But what about trichotillomania? Most likely, you’ve never even heard of it; and believe it or not, it’s more common than anorexia and affects approximately 2-5 percent of the population.

Trichotillomania, hair pulling disorder, is a BFRB (body-focused repetitive behavior) in which a person is compelled to pull out hair from anywhere on their body, often resulting in noticeable bald patches. There is not one specific reason someone may have trichotillomania. While research has shown that it is very possible that it could be genetic, there are still many other factors involved. At the moment, there is no cure.

I’ve had trichotillomania since I was ten years old; currently, I am 17 and am about to enter my senior year of high school. I’ve worn wigs to cover my head when I was bald, and every day I hide my sparse eyebrows with brow makeup. Even though I am open about my trichotillomania, I still experience shame on a daily basis, especially after I pull.

It is impossible to understand what it’s like to live with a BFRB unless you are actually diagnosed with one. One thing we can do, though, is educate others about BFRBs and explain our experiences to them. Here are five things that trichsters like me want others to know about us.

1. Even though we say we want to stop, we don’t always want to stop

Don’t get me wrong; if it was that easy to stop, I would. But unfortunately, it isn’t. However, there are some times when I am conscious of my pulling, yet I choose not to try and stop. Instead of reaching for a fidget toy or getting up and going to a different room, I would rather sit and pull my hair.

The reason for this is that I like the feeling of pulling my hair so much; it feels natural and I do not know what I would do otherwise. I have a theory: I’ve had trich for so long that trich has “brainwashed” me into thinking I like pulling my hair, and in order to stop pulling, I first need to come to terms with actually wanting to stop once and for all. In order to stop, I have to be fully motivated and willing — and I don’t know if I am yet.

2. If you think my hair pulling is weird, imagine how embarrassing it is for me

We’re the ones who have to live with and face the aftermath of our disorder, not you. Yeah, I understand that my lack of eyebrows sometimes may look weird to you, but it’s even harder for me to deal with. I’ve spent countless hours trying to perfect them and make them look the least bit natural so I don’t get made fun of. And you think wigs are weird? I’ve spent even more hours trying to get it to look nice than you can imagine. So if you think our hair pulling is weird — we’re the ones having to live with it, not you.

3. We can ruin a year’s hard work in minutes

If we have an urge to pull, and do start to pull (because it just feels so necessary), we might tell ourselves that we will pull “just one,” — but it’s never just one. Because then we find another hair that has to go, and another, and another, until we’re left with a bald patch — right where we were before. Relapse is very hard to deal with, and oftentimes, we feel terrible after having ruined our regrowth. We were doing so well, but now it’s all down the drain.

This has happened to me quite a few times. The worst was when I was in seventh grade. I finally had full eyebrows, but in the spring, I started pulling at them again. One afternoon, while my parents were at my sister’s soccer game, I was studying and pulled all of them out. I called my parents crying and asked them to come home because I was so ashamed and upset. I didn’t want to go to school the next day because I didn’t want others to see me. When my mom told me I had to, I asked if I could fill my eyebrows in with Crayola marker (I didn’t know about eyebrow pencil then).

4. We don’t always know when we’re pulling.

If you catch us pulling, don’t assume we are aware of it. For many of us, the act of pulling is a subconscious behavior. Pulling just feels so natural for us; many times, our hand just goes up automatically and searches for a hair to pull. We don’t even think about the fact that we are pulling; at that moment, we’re so engrossed in the behavior, we don’t pay attention to it. We just go about our day normally, but pull our hair whilst doing so.

5. We may or may not want to talk about it, so let us come to you

No matter how open we may be about our trich, it’s still a hard thing for us to talk about at times, because it causes us to feel so much shame. The funny thing is, personally, I am more comfortable talking about my trich with my friends than I am with my parents. I think many other trichsters can relate to this, because we feel like we’re disappointing our parents. We don’t want to show them that we’ve been hurting. Instead, it’s easier to talk to people our own age or therapists, who will better understand what we are going through.

Of course, there are times when we might be open to talking about it. And if that time does come, we will come to you and talk. Don’t force it upon us. It may take years for us to talk to you about it, or maybe we never will. Trich is just a really hard thing to talk about, and for some of us, it’s embarrassing.

If you’re struggling with trichotillomania or know someone who is, resources and information are available at The TLC Foundation for BFRBs. You are not alone.

Images: Mackensie Freeman