The trichotillomania community is strong. I mean, when you have a disorder that only affects two to three percent of the population, it’s tricky (no pun intended) not to feel a bond with someone else going through the same thing.
In so many ways, the community that has formed because of trichotillomania is wonderful. People with trich support one another, sharing stories of how trich entered their lives, of techniques that have helped them to stop pulling (or to pull just a little less) and of techniques that really, really didn’t work out. When it feels like the entire world is staring at the bald patch on your head or judging you for pinching at the hairs on your knuckles, it’s nice to know someone else out there just gets it.
However, there are consequences of this community. Because the percentage of people who have trich is so small, it makes sense that only a few stories about trich get widely spread throughout the community. A few people become the faces of trichotillomania, and a few stories become something of the “everyman’s story” of trich.
Now, these stories aren’t wrong. It’s crucial for people with trich to tell their stories, both to inform the greater population about this lesser known illness and to start to push aside any sense of shame there might be. However, when so few stories become well-known, those stories start to become the “bible of trich.”
For example, most stories about trich involve an early onset. It’s usually some time in elementary or middle school, maybe high school in a few cases. I started pulling my freshman year of college. When I Googled “pulling hair out” and found stories about trichotillomania, at first, I was astounded I could have a diagnosis. Then, I realized everyone was young when they started pulling. Does that mean my trich was somehow lesser than that of those who started pulling at a young age?
When I first started pulling, it only affected my eyebrows. I felt ashamed, but I knew I was able to simply draw them in with a pencil or let my bangs fall into my face to hide. I read about people who were balding because of their trich. Thus, I felt like my trich just wasn’t as serious and that I had no right to complain.
So, I stayed silent.
I was a silent observer of the trichotillomania community for more than four years, not because I had nothing to contribute to the conversation, but because I felt I just wasn’t doing anything that gave me a right to a voice in the community. Honestly, I just didn’t feel like my trich was “bad enough,” and that fear kept me from seeking help for more than four years. I waited until my trich had spread to the hair on my head, and only then did I feel like my trichotillomania was “real.”
Since I’ve reached that point, I realize I should’ve never felt ashamed for how trichotillomania affected me. There is no right way to have trich. Yes, we all struggle with pulling out our hair, but that is the only definite overlap. Maybe you don’t pull the hair from your scalp. Maybe you don’t find fidget toys helpful. Maybe you don’t feel the seemingly required sense of shame about pulling. Maybe you feel you’re “too young” or “too old” to have trich.
Don’t question your right to be a part of this community. You’re not dealing with trichotillomania incorrectly. All of your feelings regarding trich are justified, and your trich is no less important than mine or anyone else’s. Our battles are separate and unique, yes, but they are related. You’re entitled to the same amount of respect and support as everyone else in this community. Your battle is your battle, but you don’t have to fight it alone.
Image via Thinkstock.