by Jarrah Hodge
I’ve been struggling with whether or not to write on this topic ever since we started the “My Reality” series here at Gender Focus. On the one hand I think it’s important to share these stories because the stigma involved with mental illness is a huge problem. On the other hand, that very same stigma made me worried that talking about my experiences would cause my friends and coworkers to look at me differently.
But I finally decided to face up to the potential consequences because of GF contributor Roxanna Bennett, who is writing about her own experiences on her blog Choose Your Own Adventure. She drew my attention to the fact that last week (May 6-12) was Mental Health Week in Canada, and the main goals are raising awareness and fighting stigma.
So here goes.
I’m a gainfully-employed communications professional, a cat-loving uber-nerd, an occasional TV commentator and a feminist activist and award-winning blogger. I also happen to have a disorder that was until recently known as trichotillomania. In recognition of the fact that the disorder has nothing to do with “mania”, the DSM-5 has now added an explainer to the name: Trichotillomania (Hair-Pulling Disorder).
Trichotillomania (I’m just going to use the short-form “trich” or the previously-recognized abbreviation TTM for the rest of this article) is classified as an Anxiety and Obsessive-Compulsive Spectrum Disorder and it is characterized by the irresistible urge to pull out hair from your scalp, eyebrows or other parts of your body. I’ll start by giving a few more facts before I go in to how I experience it.
According to Psychiatric Times, up to 3.4% of adults have TTM (Olivia Munn is probably the most well-known example) and nobody knows for sure what causes it, though there are theories. It is not a nervous habit that you can just stop. It is also not causally-linked to experiencing child abuse or other trauma. It does not come out of a desire to self-harm; it doesn’t even hurt. According to the Trichotillomania Learning Center, trich actually acts as a “a self-soothing mechanism” to alleviate anxiety.
Tackling stigma is important in dealing with all mental illness but in trich has a particular direct connection to beauty ideals in our society. Most people with TTM are girls and women like me, who deal with constant messages telling them they have to look a certain way. When their disorder leaves them with bald patches on their head or gaps in their eyelashes, many withdraw. If a trichster doesn’t feel their elaborate beauty routine is enough to let them fit in, they may isolate themselves from work, school and/or medical care.
I started pulling out my eyelashes when I was around nine years old, for no obvious reason. My mom was quite alarmed and took me to the doctor, who guessed maybe my eyes were itchy and gave me a cream to put on the eyelashes. Of course, that was not the issue.
Not long after, I started pulling my eyebrows as well. It might be hard for you to understand but it felt good. In the spots where I pulled, new stubby hairs would come in and those felt even better to pull. Pulling kept me feeling calm and in control.
Around the time I was 10 years old the other kids started noticing the gaps in my eyebrows. I remember girls in Girl Guides whispering at me that I was a freak and pointing to my eyebrows. I was already being bullied for other reasons and this just made it worse. I felt exposed and ashamed.
My mom’s worry about how this was hurting my looks didn’t help. I know she meant well when she pointed out how beautiful my eyelashes had been; even with the TTM diagnosis, my mom didn’t understand why I couldn’t stop. But I knew how bare and puffy my eyes looked and I felt a deep sense of pain, guilt and failure. I didn’t know how to stop and each day I was reminded that everyone saw how ugly I thought I was making myself.
When my parents separated when I was 13 I went into counseling. In addition to issues around the divorce, my counsellor and I tried to tackle the trich. We tried a reward system with prizes if I could go pull-free and a style of aversion therapy where I snapped an elastic band on my wrist when I wanted to pull. We analyzed my patterns and tried to develop new mantras. I also tried hypnotherapy. Nothing worked for very long and I still felt like a monstrous creation.
However, part-way through university I stopped feeling the urge to pull my eyelashes and they all grew back. Even though I’m not sure why it happened I’m proud of it because it was the only part of my trich that risked my health, by leaving my eyes unprotected.
But another even more significant shift happened; people stopped noticing or caring about my eyebrows. Part of it was that I was getting better at penciling in replacements, but more than that it was that I had grown up and so had my peers. I was also finally starting to feel like I had worth as a human being and that maybe having trich didn’t change that.
I tried new things periodically: more hypnotherapy, online support groups, supplements, wearing gloves or fake nails, even SSRI medication. The longest I ever went pull-free was two weeks. Whenever I tried I was overwhelmed with anxiety and it required a ton of mental energy to monitor my urges and stop myself from pulling. The biggest challenge is that I always have access to the tools to keep up the behaviour: my hands and my hair. If you have TTM and you want to pull hard enough, it is very easy to give in and do so.
I haven’t totally given up on trying to go pull-free again but it’s not the highest priority for me at this time given how busy I am and how I now know that I’m a pretty kick-ass, loveable person regardless of how much hair I have. Feminism has definitely helped with that.
Unfortunately, although I now have full eyelashes, I started pulling hair from my head a couple of years ago to the point where I have large bald patches on the back of my neck and patchy areas around the crown of my head.
When you see me day to day you might notice my hair looks a little off. Maybe it moves a bit funny or it’s just too put-together. The women at the TV studio where I’ve been appearing as a youth pundit have remarked that my hair always looks perfect. That’s because it’s not real; it’s a wig.
I made the decision to start wearing a wig last fall because I could no longer find a hairstyle that hid the patchy areas. My feminist ideals caused a conflict because I do want to end the stigma associated with illnesses like trich and hiding it to meet beauty ideals is problematic. On the other hand, it protects most of my hair from pulling. Even more importantly, it lets me set boundaries on when I want to talk about my disorder and who I want to talk about it with. Writing this post is another way I’m trying to talk about it on my own terms.
If you aren’t sure how to talk with someone like me, my first suggestion would be not to ask me or anyone else with trich “Why don’t you just stop?” As Sandy Rosenblatt said in her piece on her experience with Trich (which really resonated with me):
It is a question many of us who have the disorder ask ourselves on a daily basis. When asked by someone else, we usually just wait uncomfortably for the subject to change. Here is the answer: Most of us will never be able to stop. If we could, we would.
Just let us trichsters deal with it in our own way, let anyone you know who has it know they’re not alone, and keep doing what you can to learn and understand.