Here is the uncomfortable truth: trichotillomania, the hair pulling disorder, is a chronic disorder that waxes and wanes in severity. Chronic, of course, meaning long-term. This means that people who develop trichotillomania will most likely have it in some capacity for the duration of their life. Now before you share a story about yourself or a person you know completely stopping just give me a moment.
It’s common for people with trichotillomania, a body-focused repetitive behavior (BFRB) to have other BFRBs throughout their lifetime like nail biting, cheek biting, skin picking, tongue chewing, etc. The BFRBs can happen in isolation or simultaneously. So I ask you this: If you’ve stopped pulling out your hair, what have you done instead to self-soothe? When I’ve posed this question for the BFRB community I was met with, “Oh, yeah I have been constantly biting my nails” or “My cheek biting did increase.” Being able to stop your hair pulling is a huge accomplishment and I am not minimizing that—I would never.
My purpose with the above information is to shed light on the nature of this class of disorders many of us are currently living with, chronically.
The moment I started pulling out my hair at 10 years old I wanted to stop. I needed to find a cure for this behavior that was causing me distress. MAJOR distress. Impairing my functioning. Making my life a living hell.
I was told by therapists and other mental health professionals that if I really wanted to stop I’d have to try really hard. So what have I been doing this whole time? I was trying my hardest! My trichotillomania was my enemy and I was doing everything I could to beat it—including taking multiple medications.
I was led to believe that it was my choice whether I pulled out all of my eyelashes or not. The idea that I might have to live with this disorder was never explained to me. The pressure was on me, the person with the disorder. Somehow that didn’t make sense to me. It’s not my fault I have this disorder. I never asked for this.
The idea that I could completely stop and be “pull-free” continued to plague me as I grew up because I wasn’t told anything else. As the internet and social media grew I saw ads and accounts dedicated to curing trichotillomania. Beating trichotillomania. Stopping trichotillomania. I’ve had this disorder for 23 years and haven’t completely stopped. Where are all of these “chosen ones”? Why can’t I be the “chosen one”?
I didn’t know that there was a different path of thinking until I started down it myself. What drove me was the exhaustion I felt around my trichotillomania. I was tired of viewing it as my enemy. I was tired of hiding it and carrying the weight of shame. The real issue was that nothing was changing. It’s not like treating my trichotillomania as an enemy made me stop doing it. That feeling ashamed and hiding it made it go away. I was still doing it while carrying these negative thoughts. For what?
I started down the path of self-acceptance. Questioning and challenging my previous thought patterns. Ones that have been ingrained in me since I was 10 years old. So what if I continued pulling? What difference would that make if I truly loved myself—flaws and all? Focusing on stopping or finding “the cure!” was no longer an option for me because time proved it fruitless. Instead I could focus on managing my trichotillomania the best that I could and understand that sometimes there’s nothing you can do.
I think when people hear “acceptance” and “trichotillomania” in the same sentence they can become uncomfortable. “What do you mean you’ve accepted it? You’ve given up?” And my response to that is: Of course I haven’t!
Accepting that trichotillomania may be with me forever actually gave me the freedom to manage it better because it allowed me to give up the desire for a cure and instead grow a desire to try new things that could work for me. Releasing the need to be perfectly “pull-free” allowed me to have days and weeks without pulling because I didn’t place unnecessary pressure on myself. Do you see what I’m getting at?
Believing in only one outcome (an unrealistic one at that) for your disorder limits you. You can accept that a disorder may be in your life forever while also actively managing it. Both things can be true.
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