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How I Found Opportunity In Sharing My Secret Disorder

I was positive people wouldn't accept me if they knew I pulled out my hair. And I was even more positive that if they did find out, if they didn't judge me for pulling, they'd reject me for the fact that I didn't know why I was doing it, and that I wasn't able to stop myself.
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All of us have secrets. We learn to live with them. We usually keep them close. And of all of them, there's usually one biggie. One we hope and pray will never come out. But what are we so afraid would happen if others discovered our secret? Why do we hold it so tightly against our chests? I have been living with trichotillomania ("trich" for short) for 23 years. It is a disorder that two in 50 Americans live with, including actress Olivia Munn. Trichotillomania falls under the category of Body Focused Repetitive Disorder (BFRB) in the DSM 5. Other disorders in this category include skin picking and nail biting. October 1-7 is BFRB Awareness Week. I pull out my upper eyelashes, and I believed that if people noticed or I shared this fact, they would stop liking or loving me. I was sure they would judge me, tell others what a freak I was. I did everything in my power to make sure no one would ever notice. I lived in extreme shame.

Applying my dark black eyeliner became an art form. When I slept at someone's house I washed my face, but never removed my eyeliner. In fact, I woke up in the middle of the night just to reapply it so that in the morning it would be just as perfect as when I'd fallen asleep.

I was positive people wouldn't accept me if they knew I pulled out my hair. And I was even more positive that if they did find out, if they didn't judge me for pulling, they'd reject me for the fact that I didn't know why I was doing it, and that I wasn't able to stop myself.

As I got older, a few people began to notice. If they didn't ask, I knew by the look they gave me. When they did ask, I took a deep breath and wished the conversation away. When that, too, failed and questions still hung, unanswered, I answered them. And more times than not, I received positive responses. Many people shared something they held close to them, which they now felt safe to share with me. We connected over our deeply held, often shameful secrets. Twice people shared that they also had trich. Despite getting responses that were the complete opposite of what I had anticipated (including discovering that others in my own life walked around with the same shame as me), I still didn't feel safe sharing my secret. In serious relationships with men in particular, I hid it as long as possible. When they did find out, I prayed they wouldn't leave me. They never did. But even knowing that people were accepting, I still wasn't ready to really share. I was holding onto those few negative responses from when I was a girl. I couldn't let go of them, and they were running my show.

I'm not exactly sure what changed or why, but one day I decided I was going to test the waters. I started by telling just a few friends that I had trich. Trusted friends. Every single one was 100% accepting, and yet again I found that sharing had others take the opportunity to share. They told me secrets they had always feared revealing. They shared of themselves.

This got me thinking: Whenever I shared my secret, I consistently created an opportunity for those closest to me to share theirs. I was creating a space for them to get something off of their chests that they'd been holding for years. I never saw it coming, but it was beautiful when it did. I began to get a little more bold. I stood up in a 200-person seminar in which the topic was self-development and brain patterns and shared my secret yet again. The instructor actually thanked me; he was grateful I had spoken up, as it was an excellent example of the lesson he was teaching. And significantly, on the next break, quite a few people hugged me, thanked me and again shared something about themselves. There it was again: an opportunity to connect with others.

I still wasn't ready to share with everyone, but I found myself telling more and more people. Finally something came over me. I decided to go all out. I wrote an article and submitted it to The Huffington Post -- the most public of forums I could think of (after all, once something is on the Internet, it's out forever). I'm still not really sure what prompted me to make that decision. Maybe I was guided by something greater than myself. Maybe I was just ready. At any rate, once I submitted it my nerves took over. The same negative chatter spun in my head: What if people didn't like or love me? What if they judged me or, even worse, told others what a freak I was? If published, it would be irreversible. When people Googled me, it would be one of the first things that came up. My secret would become public knowledge.

As I peeled back the negative layers, I noticed I was still nervous. Why? That was when I realized that in fact, I was even more nervous that my article would never be published. I was afraid no one would ever read my words, that others living with trich would still feel utterly alone. I realized that I wanted to share, because it was an opportunity.

A few days later, I got the news: My story was going to be published! Not only was it going to be published, it was going to be featured on the homepage of AOL. I cried. I was elated and proud. I could never could have predicted what happened next.

As soon as the article came out, friends who'd never known my secret called, texted and emailed. They said I was beautiful, even brave. At least five said they'd been living with the same disorder, also living in fear and shame. Three had never told anyone before me. Others were reaching out sharing other big secrets they had been hanging on to. Again, my sharing had opened up an opportunity for others to safely share what they'd never shared before. They knew I would love, accept, and understand them, and never judge them.

I had no idea the larger impact that would come of my piece. People from all over the United States read my piece, as did those from the all over the world including UK, Sweden, Australia, Japan, Ireland, etc... The comments left under the article itself were beautiful. Most resonated with what I had written and shared this could have been their own stories. I was thanked for being the voice people couldn't voice themselves. But perhaps the most meaningful connections came from mothers who found me on Facebook, asking me to speak with their teenage daughters. Their girls with trichotillomania were shutting them out because they felt their mothers would "never understand," and the mothers were desperate for someone to get through. I'm now speaking to quite a few of these girls. Really, all I am providing them is an opportunity to feel they are not alone, an opportunity to feel truly understood. And that's what I realized I was also providing to a wider audience: I was beginning to create a community for those who had felt lonely, misunderstood, unliked and worst of all, unloved from the shame they were carrying. Speaking my own truth had given others the opportunity to speak theirs, to feel loved and share themselves with people from all over the world. I was stunned. I had done that.

While there are days when I struggle with those same negative voices I used to hear so often, now there is another voice. It is the voice that tells me that who I am is a gift. It says that sharing my story is a gift. It reminds me that I am not only a gift to my loved ones, but to the larger community of people who need someone like me to speak up and show the world that we are a group of amazing human beings. We happen to have a disorder in which we pull out our hair; underneath that, we're human beings: flawed, blundering, ashamed, hopeful, sensitive, often misunderstood, sometimes deeply understood, and beautiful. Without that same disorder, I might not have had the chance to remind both myself and others that this is who I am. Who we are.

So: is trichotillomania an opportunity?

Yes. It is.