What I Gained By Sharing My Biggest Secret

by | October 1, 2014
filed under My Reality

awa2014About a year and a half ago I went public with what had previously been my biggest secret, something I lived every day dreading that people would discover: I have trichotillomania. I pull my hair out.

Trichotillomania (trich or TTM for short) is a body-focused repetitive behaviour (BFRB). BFRBs are “a group of repetitive self-grooming behaviours in which an individual damages* [their] appearance, or causes physical injury through pulling, picking, biting or scraping of the hair, skin or nails.” It’s estimated that 2-4% of Canadians live with a body-focused repetitive behaviour. and with BFRB Awareness Week from October 1-7, I thought it was a good opportunity to reflect on what being more open about my disorder has meant.

It The theme of this year’s BFRB Awareness Week is “Spread the Word. Break the Stigma,” and that’s what I was hoping to do last year when I published my article: “My Reality: I Pull My Hair Out.”

I wrote about what trichotillomania is and all the misconceptions people have – like it’s just a bad habit like biting your nails, or that it’s a form of self-harm. I wrote about starting to pull out my eyelashes when I was nine years old, for no obvious reason, and the related bullying I experienced. I wrote about getting to the point I am now, wearing a wig every day. I wrote about all the ways I’ve tried and have been unable to stop, and how I hope that I can stop someday, but ultimately know my value as a human being is so much more than my hair.

But I was scared to write it, probably more than I have been about anything else I’ve written on this blog. It was kind of terrifying to think that I would go into work the next day and everyone would know, and even worse to think that anyone who Googled my name – including people who troll my blog – would find out too.

It ended up being absolutely, 100% the right decision to share my story. Before the post, I worried that everyone who saw me would know I was wearing a wig and would think I was a freak. Even though I knew the disorder didn’t define me, I wasn’t confident about how others would react. I had started telling a few people close to me and had received very positive, understanding reactions, but I didn’t want to have to rehash my story for any random nosy neighbour or another person in an elevator. When people made comments about my hair in any way I would feel my heart start to beat more quickly and I’d try to think of something benign to say to throw them off the trail.

After I wrote the post, I was overwhelmed by messages of support from friends, family and colleagues. Other trichsters (as many of us refer to ourselves) reached out to say they saw themselves reflected in my story and appreciated me helping get the word out.

Not long after I published my story, I got a call asking me to go back on Global BC1 with Jill Krop, where I had appeared as a youth pundit during the spring provincial election, to talk about trich. From that appearance, I started to hear from more trichsters who were making even bigger efforts to break down the stigma and raise awareness of BFRBs. The first who reached out was the fabulous and inspiring Sandy Rosenblatt, who asked me to contribute a longer version of my article to a book she was putting out called Doesn’t It Hurt?: Confessions of Compulsive Hair-Pullers.

Sandy also wrote a piece recently about what it’s meant for her to be open about having trich, and she wrote about something that rings true to me as well:

“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.”

Telling my story was cathartic for me and made others feel like they had space to open up. It made my daily life infinitely less stressful. Instead of worrying when someone else would discover my secret, I knew if I got an awkward question I could just send someone the link to my post, and everything I wanted to say would be right there. They’d have time to process it and know that ultimately they’d have to look past it.

IMG_3251Since then, I invested in a high-quality wig, after a woman at Geek Girl Con dressed like Captain Janeway very rudely and loudly came up to me the day after my panel and said, “Oh, it’s a wig. I knew it. My friends and I were sitting in your panel debating whether it was, but I could tell.”

As much as I know my BFRB doesn’t define me, it was very hard not to feel defensive and insecure after that, thinking that she and her friends were pointing and talking about my wig instead of listening to what I had to say. I went for a higher-quality wig on advice from another trichster, because I want to be honest about my disorder, but I also want to be allowed to set the terms for the conversation, and that means being allowed to refuse to have conversations about it with random strangers, especially if they ask super rudely, regardless of how awesome their Star Trek costume might be.

Two things I struggle with are exercise and dating. It was really hard to find a type of exercise I enjoyed that wouldn’t show people my missing hair, and wearing a wig while exercising is not ideal. I’m finally getting into swimming and aquacize, which I can do wearing a swim cap. It also helped to realize everyone looks ridiculous at the pool for one reason or another, so there’s no point in feeling insecure.

I haven’t dated since I started needing to wear a wig. When it was just my eyebrows missing it didn’t feel quite as difficult, and usually guys wouldn’t even notice until I told them. But I struggle to imagine going on a date with a guy and having to explain trichotillomania to him before he finds out I’m wearing a wig. I know I have a lot to bring to a relationship that has nothing to do with my hair, but I just don’t know how I get to that point.  Also, I am ridiculously busy.

But overall, things are good. Trich is a part of me but it is not who I am. Who I am is someone who goes on TV to ask political questions of decision-makers, someone who has great friends, someone who works hard and brings good ideas to her job, someone who spends upwards of 20 hours a week blogging and editing and volunteering to try to make our world a more equal place to live, and also someone who takes selfies with action figures, gets up on stage and speaks at Star Trek conventions, sings to her cats, and thinks a lot about big issues.

If you know someone out there with trich or another BFRB, please also remember that they are more than their disorder. Let them know that they’re not alone and give them the space to let you know if they need any support and what that might look like.

Here are some ways you can help raise awareness and fight the stigma during BFRB Awareness Week:

Finally, if you have trich or another BFRB, think about sharing your story. It can really help others and even change your own life in powerful ways.

, , , , ,