The Mighty Logo

When I Came ‘Out and Proud’ About My Hair Pulling Disorder

The most helpful emails in health
Browse our free newsletters

Last weekend I attended my second conference for body-focused repetitive behaviors (BFRB) such as trichotillomania (hair pulling disorder) and dermatillomania (skin picking disorder), held by the TLC Foundation for BFRBs. It got me thinking about how thankful I am for having trichotillomania. Yes, you read that correctly, I am thankful for having a disorder that causes me to pull out my hair and have bald spots and missing eyebrows. Just a few years ago, I would never imagine myself saying that. But despite the fact that it’s caused me to lose most of my hair and eyebrows, I have gained so much more from having trichotillomania. Right after the conference I made this post on my Facebook:

“My wonderful therapist always says, ‘Recovery is possible not with ‘I’ but ‘we.’’ I didn’t understand what this truly meant until I experienced the overwhelming love, support, understanding, and community at my first TLC BFRB conference last year. I felt a part of something bigger than myself, and it gave me the courage to be proud of who I am and what I have gone through on my trichotillomania journey, not embarrassed or ashamed. For a long time, I felt that trichotillomania consumed me, it was my identity, and I felt as though a part of me had become missing, just because my hair had started to become “missing.” Seeing people at all different stages of their recovery, beautiful, caring, brave souls who were much more than their conditions, sparked a change in the way I looked at myself. I definitely didn’t look at these people as though they were ‘damaged’ or ‘incomplete,’ so why then should I view myself that way? At the conference, for the first time, something that usually made me feel different, made me feel accepted and included. No longer was I in isolation, suffering in silence. I had gained a second family; I became part of a wonderful worldwide community. And thus, I began the road to recovery.

When I say recovery, I don’t mean that I have controlled or overcome my hair pulling. As hard as I try to use methods to reduce it, I don’t have total control over my pulling, but I have become at peace with it. I am certainly not ‘pull-free,’ nor can I recall a day I have ever gone pull free… but that is OK with me. I really can’t say if I will ever fully stop pulling, but all I can do is focus day by day and be gentle with myself. Heck, I wear a hairpiece to cover the extensive hair loss from my head, I only have half of each eyebrow, and can’t remember the last time I’ve had full brows. These things used to cause significant distress and shame to me, but I am proud to say that they don’t anymore. I used to feel ugly looking at myself in the mirror without makeup, or without my bald spots covered, disgusted at the ‘damage’ I had caused to myself. Now, drawing on my eyebrows to leave the house has just become a part of my morning routine that I don’t think twice about. I’m honestly more comfortable at home, when I don’t wear makeup (something that a year ago I wasn’t even comfortable doing).

Trichotillomania and my appearance no longer have control over my self-esteem, confidence and happiness, and that was truly all I ever wanted to achieve. So although I have not overcome the urge to pull my hair out, I have overcome the shame it once caused me and I am living my life to the fullest in spite of it. Most importantly, I am not living in secrecy or isolation anymore.

Although it doesn’t define me, trichotillomania is still a big part of my life, however, it has shifted to being a very positive aspect. Trich has shaped who I am, it’s made me stronger, and I would not be able to love and accept myself as much as I do now, had it not been for trich… And for that I am truly thankful for trichotillomania and I embrace it.

I am so beyond happy and my heart is so full from this past weekend. I am incredibly grateful I got to experience the conference again this year, see all my friends from last year, and meet new people. Lots of emotions going at the conference. Not going to lie, at the closing ceremony my mom and I shared a hug that lasted about five minutes, bawling our eyes out… happy tears! We have each come so far, both individually and together. Another reason I am thankful for trich is that over time it has brought us so much closer, and strengthened our relationship. I can’t thank her enough, and all of my family and friends for their unwavering support. And of course the TLC Foundation and my BFRB family, without whom I wouldn’t be where I am today. I am ‘out and proud’ as my friend Jude would say, and I will never go back into hiding.”

I have always been more of a reserved person, and that eventually developed into social anxiety around the time I started high school. Around that same time is when my hair loss from pulling became noticeable, so I’m sure you can imagine how much my social anxiety increased. I truly felt like I was living a double life, worrying all the time about the appearance of my hair. I was harboring a dark secret, but one that was on full display for everyone to see. My life revolved around trying to hide it. I was caught in a cycle of self-loathing.

After my first conference last year, I decided I didn’t want to hide it any more and “officially” came out by making a post on Facebook. I was met with overwhelming support from family and friends. I still decided to hide the physical aspects of my trich, but my secret was out, and my life no longer revolved around it.

Finally I felt that I could just be me — no more double life. I was free. Up until that point, trich was my identity (or so I thought). But having trich almost forced me, in a way, to create an identity for myself beyond my appearance. Finally, I was doing just that. We’ve all heard it before, and as cliché as it sounds, “beauty comes from within.” I fully understood the meaning of this because of trich. When I stopped attaching so much importance to my appearance, trichotillomania had much less dominance on my life. I’ve learned the value of self-love and compassion.

The conference was sincerely the best weekend of my life. I’ve never been in a more supportive, loving and accepting environment. I’ve made some of my closest friends at these conferences, and it’s sad to think they would not be in my life if I did not have trich. This year’s was even better than last. I surprised myself at just how at ease I felt while socializing with so many people. Amazingly, my social anxiety was completely absent the whole weekend. Since returning back home and back to school, that confidence has remained intact… Would that have happened if I didn’t have trich? Doubtful.

I would choose confidence, lifelong friends and self-love over having hair and eyebrows in a heartbeat. So yes, I am thankful for having trichotillomania.

The Mighty is asking the following: What was the moment that made you realize it was time to face your mental illness? What was your next step? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Originally published: April 26, 2016
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home