Day 7: The Importance of the Trichotillomania Community

This is my final post in honor of Trichotillomania Awareness Week. I want to thank everyone who came to my blog and read my articles. I know that I pretty much ambushed some of you who were expecting just another post about Chilean-Gringa life and I sincerely thank you for reading anyway and for so many kind, encouraging comments. I also want to thank everyone who came here while searching for Trichotillomania, or by coincidence. It's been a great process for me posting and getting such great feedback. I think I reached my creating "awareness" goal in many ways. I'm toying around with the idea of creating a separate Trichotillomania blog for posting outside of this week, but I haven't decided if I'm going through with it. If I do, I'll post the link on here!

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One of the most common characteristics that people affected by Trichotillomania experience is isolation. The disorder usually begins as a solitary activity. Then, as it worsens and you begin to see significant hair loss, there's a certain kind of negative transformation that takes place. Not only do you feel "separate" or "different" from others because of this disorder, but you also begin to lose your sense of self-esteem and self-worth. Hugh Grubb, M.A., M.F.T., in one of the best articles on Trichotillomania I've ever read called "Recovering from the Trauma of Trichotillomania," exposes an interesting dichotomy that exists in sufferers: "The hair-puller not only feels like the victim of an irrational, destructive act, but like the perpetrator of it as well." This disorder causes you to become your own self-defeating "worst enemy" of sorts.

Mr. Grubb also mentions that not only do hair-pullers experience an isolating trauma in the disorder, but they also reach of point of trauma in the actual recovery:

A serious attempt to control pulling behavior brings about a confrontation with the hair-puller's fragile self-confidence and threatens his or her sense of wholeness and integrity. Which part of me is going to win out this time?' It is a traumatic experience in itself. The deep inner change required to no longer identify with the perpetrator-victim poles of experience means that separation from a familiar and relatively stable, although distressing, world must occur. The pulling has in some way created a balance, like a self-regulating system in which the behavior has played a dependable role. Despite the pain, it is familiar and concrete; known rather than unknown. (See Source: Grubb Article)

Social withdraw is not a occurrence unique to Trichotillomania. However, it makes its mark in different ways. A puller may feel exceptionally self-conscious about his or her thinning hair, bald spots or methods to cover the hair loss. They may hide it behind hats or bandannas. But in many occasions, the puller avoids unnecessary social interactions. They may feel self-conscious going swimming or on roller coasters or with the windows down, occasions when they might feel themselves "revealed."

When I met my husband and we began dating, I felt like he was constantly staring at my hair. I imagined him looking at the short hairs that were growing in, thought that he was probably trying to figure out what was wrong with me. I couldn't take it any longer and revealed to him that I pulled out my own hair, and that was why my hair looked so strange. He actually hadn't been staring at my hair. Instead, it was my own paranoia about my hair that made me feel that way. But he listened to my situation with empathy, and it didn't scare him away. (I'm really happy I had the guts to bring it up to him, I guess it shows how comfortable I was with him from the very beginning.)

Yet, the self-consciousness isn't just about your hair. You feel defective, frustrated... like a freak. And I think that this is something really paralyzing, especially when the only person with Trichotillomania that you know is yourself.

My biggest fear about a support group is that I would walk into a room and look at people who I perceived to either be "just as much as a freak as me" or people who resembled my fears for where I might be heading. I was in denial about myself, and I didn't want to look into my own mirror, so to say. I was so determined to push my disorder to the side and pretend like I had everything together.

When my classmate approached me about coming to the support group (you can read the story in My Trichotillomania Story Part II) I tried not to let my voice quiver. I tried to play it cool. "Yeah, I have that." "Support group?" "Well my problem with support group is that I don't want to go to some place and feel all weepy and sorry for myself." "I just don't like to do that. I'm a really 'together' person."

I've been playing "too cool" for most of my life. It's a defense mechanism. A lot of times I turn to "too cool" instead of letting my real feelings show, which are actually the fear of rejection. But my classmate responded, "We're not like that. In fact, I would say that many of the members have become my close, personal friends."

Yet, something that happened that day, and then when I actually did go to my first support group meeting I felt it happening again. I began to lose my own self-imposed isolation. Trichotillomania was no longer my own personal "defect." Actually reaching out to others and interacting in safe-spaces, such as Support Groups, are essential to the recovery and healing process.

Mr. Grubb states, "Telling one's story to someone else, and experiencing it being taken in and felt and thought about, allows it to be taken back in a different, less defensive way. The story now has less destructiveness, less power to cause feelings of alienation, and is less likely to overwhelm the puller's ability to have the perceptions and thoughts that intuitively guide her towards helping oneself."

In fact, Mr. Grubb highlights changing ones relationship with one's self and with others as an essential step to Trichotillomania recovery. A safe, well-run support group is the perfect place to begin this process. Letting people "in" again, being able to vocalize your own story, listening to how others' stories and problems resemble yours not only lets you know you're not alone, it makes you realize that this really isn't all your fault. You don't blame others for this disorder, so how can you keep blaming yourself? You can finally begin to "forgive the perpetrator." Your once-split-persona can become whole again.

The Trichotillomania community, while making amazing developments in the past few decades, still has a long way to go. There are still too many people who pull their hair and have no idea that this disorder has a name. There are still too many people who know don't know about Trichotillomania but do know about mood disorders and obsessive-compulsive disorders. In order to truly form a community, we have to learn to begin to lose our own shame in order to push forward. This is what Awareness Week is about. I've taken part in many other events for many different causes (Breast Cancer, Domestic Violence) and the largest part of these weeks is "Breaking the silence." I think that phrase fits into the Trichotillomania cause, too.

One of my biggest (current) regrets was that I didn't become more proactive about this while I was in Chile. Now I wish that I could have found other pullers and worked together to set up a support group. I feel like most of the Trichotillomania movements are taking place in English Speaking countries. I did find a Trichotillomania support group for Spanish Speakers, but everyone was so spread out across different countries. If you are in Chile and might consider setting something like this up, let me know and I'll get you in contact with the person who set up our support group.

I'm going to close this post with some links for more community spaces:

Trichtillomania Community Links

Trichotillomania blogs:
Ms Penny Lane's Trichotillomania Blog
Pulling Out Hair
The Trichotillomania Blog
It's Trichy (I am so absolutely proud of this puller for posting photos. That takes a ton of strength.)