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TLC Conference Reflections: Moving Forward

“I could just pull my hair out!” How often have people made that exclamation in response to something stressful going on in their lives? For many it’s a normal expression of frustration, but for people like me… and millions of others… it’s a punch in the gut. Every time I hear that I want to scream, “there’s a reason that phrase exists… there are people like me who actually do pull our hair out. You really don’t want to do that…” 

I could explain to the person how I’ve pulled my hair since I was 10 years old (more than 2/3 of my life), and I used to have to wear my hair half up, part it a certain way or wear a bandana to cover a small thin bald spot at my crown… or how I’ve worn eye makeup since I was 14 years old hoping no one would notice my lack of lashes… or how kids would make fun of me when I was in middle school for missing my eyebrows.  I could also explain how many people have to wear wigs, and are forced to deny themselves activities others take for granted like swimming, dancing, hiking, and even intimate relations with another person.

I could say all that… 

Instead I’ll say I’m tired… 23 years is a long, long time. I want to be able to walk out of my house without makeup. I want to be able to be bored or stressed without using a coping mechanism to numb out, just to regret it later. I’m ready to take back control of my hands.

This past weekend I attended the annual Trichotillomania Learning Center (TLC) conference in Newark, NJ.  It was my second conference since Orlando in 2005.  Following Orlando, I stopped pulling for months and helped lead a brief support group before moving back to New York. Now that my second conference is over, I’m feeling motivated again to utilize the strategies I learned to help recover from this disorder. 

The conference really was the perfect re-start for getting back on track. The biggest motivator turned out to be all the AMAZING people I met at the conference.  People who still pull but are confident enough not to cover up their lack of hair. People who love and accept themselves fully even with this disorder. People who have been pull free for months and sometimes even years, and are now using their free time to help others towards the success they’ve tasted. 

We learned about how recovery means something different for each person. Being pull-free is possible. But even if you aren’t pull-free, it is possible to love and accept yourself, without letting trich define who you are as a person. 

I was especially moved by Mrs. North Carolina, Josie Sanctis, who decided only three years ago to try out for Mrs. Charlotte (having never done pageants before in her life) so she could go on to hopefully win Mrs. North Carolina and become an advocate for those like her who are suffering from trichotillomania. Josie was the first beauty queen I’ve ever seen speak who exuded both internal and external beauty, as well as a loving vulnerability hard to find in any industry. She wears her heart on her sleeve and is in this to help others. She truly is an inspiration!

The best part of the conference was at the very end, when four people presented their "Success Stories." For some it was they haven't pulled in months or years and for others it was they found self-acceptance and love and are no longer ashamed. Two of the speakers were 17 year-old girls and they were incredible, both pull free now and educating their classmates and friends about what they have. Their stories moved me to tears.

People from the audience were also given the opportunity to come up to the stage and say something. At the very end, this tiny little girl (maybe 5 years old) came up to the microphone, her head hardly visible over the podium, and talked about how hard it is to stop pulling. She kept saying, very matter of fact, “I don't know why it's so hard to stop pulling and picking.” We all understood. Then she hemmed and hawed like little girls do when they're in the spotlight and don't know what to say. However, she concluded very confidently, "Before I get off stage I just want to say one more thing... I'm ready to go home but I'm really going to miss this place." We all laughed with tears in our eyes. Then Jen Raikes, executive director of TLC, exclaimed, "I think that about says it all!" 

That little girl got it.

There is nothing like the feeling of community. When basking in the warm arms of community there’s connection, love and acceptance, people who understand, motivation to work together for a common purpose. You don’t want to leave community once you’ve tasted it. I believe all people desire community; it gives them a place to belong, a place to feel safe. 

I felt safe this past weekend. I felt loved and accepted. However, I recognize that this disorder has controlled me in many ways. Although I don’t really get hung up anymore on whether or not people are staring at me, I still want to stop pulling for my own peace of mind. 

With long hair... my nemesis

With long hair... my nemesis

As of writing this blog I’m 6 days completely pull-free, and it’s been over two weeks since I pulled my lashes. I recognize there’s a fire kindling underneath me keeping me going, one I haven’t felt in years. It’s time to just do it! I chopped my hair off (which makes me less likely to want to pull), and so far so good. 

A major part of the recovery process is helping others. I’m exploring the idea of leading a support group again. There’s nothing as freeing as knowing you’re not alone after feeling alone for so long. I want to give that gift to someone else. After facilitating a 12 Step Celebrate Recovery group for two years, I feel I now have many more tools to be successful at running a peer-support group again.

I would also love to speak at schools, to teachers, counselors, psychologists, and possibly even students. Many of the children and teenagers I saw at the conference had a beautiful exuberance about them; they were having a great time, having fun together, being silly, while also being excited about what could be. If I had known about trichotillomania and that other children had this disorder when I was 11 or 12, I think my teenage experience would have been a whole lot different: easier, less lonely, and more hopeful. My goal is to make sure other children with trich know they are not alone, they are beautiful, they are special, and pulling doesn’t have to define them or control them.  

Lastly, pulling your own hair doesn’t have to ruin the rest of your life. 

I’m married to an amazing man who loves me no matter how much hair I have or don’t have… we have two adorable dogs... I have a master’s degree and a great career… we own a house and can pay our bills on time… and I have incredibly supportive family and friends who love me just for who I am. 

Trich is just a small part of my identity; however, when it takes control, it causes a lot of damage and regret in a small amount of time. I’m finally realizing it’s a waste of my energy, and I can redirect that energy to fight it… if I want to.  And I do want to! That is the first step in this journey for me, finally recognizing I don’t have to pull my hair out. There is a way to stop, if I just use the strategies I’ve been taught, continue to connect with people for mutual support, and use what I’ve learned to teach others. With God’s strength pushing me forward, I will find freedom.

I know I may have slip ups, but the key is to not beat myself up. Instead I must pick myself up and keep plugging along. I must remember, however, that I’m worth spending the time and energy to finally be free of this disease.

We are ALL worth it! Never give up hope...

For more information on trichotillomania and compulsive skin picking (a similar disorder), including resources on support groups, treatment providers, and current research, check out the Trichotillomania Learning Center at www.trich.org

Also check out the trailer for the upcoming documentary, Trichster, at www.trichster.com