5 Things I've Learned About Life With Trichotillomania From My TLC Family
At age 7, I began engaging in a behavior, involuntarily, that changed the trajectory of my life. I began pulling out my hair. A lot. Eventually, I lost it all.
I was diagnosed with trichotillomania, a disorder characterized by repetitive hair pulling resulting in noticeable hair loss. As my illness progressed, it broke the hearts of my parents and even shattered my will to live. Hair wasn’t the only thing I lost: I lost friends. I lost self-esteem. I lost the opportunity to be a kid. I lost happiness. I lost me.
Thankfully, my mother found a community that gave me a chance. The TLC Foundation for BFRBs is the largest organization in the world dealing with body-focused repetitive behaviors (BFRBs), such as trichotillomania (hair pulling) and dermatillomania (skin picking). At age 13, I was diagnosed with dermatillomania as well.
Had I never crossed paths with TLC, I can’t say for sure I would be here right now. In fact, I’m almost certain I wouldn’t be. Here are some other things I now know because of TLC:
1. My mental illness is OK.
Ten years ago, I could never imagine myself being as bold as I have become with advocating for these disorders. I was ashamed, terrified and miserable. Yet, over the years, and after many encounters with other people with BFRBs, I embraced a sense of peace regarding my illnesses. I look into the eyes of others knowing if I can feel as much empathy as I do for them, then I must be able to feel it for myself, too.
2. This is not my fault.
The most relief I’ve ever felt in my entire life was when I heard a clinician announce that BFRBs are at least partially biological. Thanks to the research done on behalf of TLC, we now know these disorders are most certainly real. People are really struggling. We don’t want this. No matter how much it may seem like a silly habit that has spun out of control, it’s not. We have TLC to thank for helping us to understand that.
3. I am worth it.
BFRBs like trichotillomania and dermatillomania are really good at making you feel worthless. You look in the mirror unable to recognize the bald, lifeless person you’re staring at. They make you feel ugly and unlovable. However, after meeting thousands of others in similar situations as myself, I realized we are all good people in need of, and deserving of, help that will make our lives better. The people I have met through TLC have never once let me feel as though I’m not worth the time or the money.
4. I can help others.
My favorite thing to do is to talk to others, particularly parents, about BFRBs. I love to know I can make a difference, no matter how small, in someone else’s experience with these disorders. I’ve had mothers come up to me in tears, hugging and thanking me. This is the best feeling in the world: to know another child will have a better experience overcoming their BFRB because I could educate them or their parents. TLC has given me a voice to use for the betterment of this cause.
5. I’m not alone.
This is, by far, the best gift I’ve ever been given: the knowledge that I am not alone. I see it in the tears streaming down the faces of my friends who identify with my own experiences. I hear it in the cracked voices of people telling their stories. Now, because of TLC, I can look in the mirror and say it to myself: You’re not alone.
TLC really is a family, and I cannot thank each and every one of you enough. Thank you, from the bottom of my heart.
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