A Body-Focused Repetitive Behaviour Awareness Week tradition here at CBSN is to gather guest blogs to share throughout the week. In the past, we’ve gotten a variety of narratives from BFRBers across the world. This week, we have four guest blogs to share with you.
I’m a former film student. This (to a certain extent) justifies the amount of money I spend on movies and shows, but I also believe film can be the best way to at least introduce a topic and help introduce little changes into daily lives. Movies and shows got me to recycle and buy used products more (Virunga), get involved in college clubs and events (Bojack Horseman), and talk more about trichotillomania (Trichster).
Last time I wrote for CBSN, in 2014, I said, “I’d give anything to be able to pull my hair out right now.”
The more things change, the more they stay the same. I could shave all my hair off tomorrow and still feel like a lot was accomplished with my trich this year.
Leading up to this writing, I finally started figuring out what my (non-school related) triggers are. That wouldn’t have been possible without being part of trichotillomania and BFRB communities that have welcomed me, and thousands of others, with open arms. In return, I’ve been doing what I can to help and raise awareness about trich the only way I know how.
On November, 15th, 2016 and then on June, 13th, 2017, I, with the assistance of a lot of amazing people, planned and hosted a screening of Trichster.
Just a real quick review, the film encapsulates trichotillomania extensively and personally through sharing the stories of people who live with it. It’s a great introduction to an otherwise daunting disorder.
The first screening I hosted was at State University of New York at New Paltz (SUNY New Paltz), sponsored and co-planned by The Media and Journalism Society, and open to all students, and the second was a regular screening at The Rosendale Theatre. The non-profit theatre raised some revenue, and we also donated money to The Canadian BFRB Support Network and The TLC Foundation for BFRBs.
After getting all the required approvals and permissions, through a lot of emailing back and forth, planning mainly involved advertising, which meant finding the computer labs that had Photoshop, adapting the film’s theatrical poster for each screening, and creating, for each screening, about 50 flyers and a large poster/foam poster board. I handed out as many flyers as I could for distribution, but had to hang a lot of them up myself, and so I dragged my sister along for one of my Cross-Hudson Valley road trips. Luckily, many store owners let me hang them up. A few SUNY New Paltz clubs, like the Undergraduate Psych Association, got involved, and there was even an article in the school paper, The New Paltz Oracle. Coincidently, there was something else in the paper’s next issue, which I’ll get to.
The first screening went very well. Katie Maul, cinematographer/producer for Trichster, was happy to take part in a Q&A, people asked great questions, and we answered them to the best of our abilities. I don’t pretend to be an expert on the subject, but, after 17 years, I know what works for me.
The second screening…honestly, I wish it had been better attended. We put in a lot of effort to tell people about it and advertise, the people who came were wonderful, but something in the marketing just didn’t click. Everyone involved was incredibly understanding, so, no regrets!
As for that other article in the Oracle, it was about a woman, Abby Shaffer, who has alopecia areata, which the article states is “a common autoimmune skin disease that causes hair loss on the scalp, face and sometimes other areas of the body. It often appears during childhood and affects as many as 6.8 million people in the United States.”
I can’t really say the differences between living with one versus living with the other, but I can say not knowing about alopecia until after the first screening is a problem. Even if our conditions, and how we cope with them, are radically different, could we have a lot to teach each other? Absolutely! So, to start, could there be BFRB groups that also include people with alopecia, or vice versa? Is that the right way to approach this? Honestly not sure, but it could be worth a shot.
Actress Tilda Swinton in Doctor Strange.
Media representation of trich, alopecia, and similar disorders is getting a lot better. Shaffer, among countless, countless others, actually covers that pretty well on her vlog. She discusses the importance of strong bald women by highlighting recent comic book films like Doctor Strange and The Wolverine. Other examples are now popping up, inside and outside the realm of comics, like Young Adult, which directly addresses with trichotillomania, and Guardians of the Galaxy 1 & 2.
We still have a lot of work to do…it’s just about talking about the right way to raise awareness. Maybe the answer is think smaller, maybe the answer is advertise better. Personally, I say thinking smaller, and not burning yourself out during your final semester of college, are highly, highly recommended. Mostly, just keep it personal, don’t lose focus on why you’re doing this and who you’re hoping to help. Look out for people in the community, both cyber and physical, and talk to them when they find you.
While writing this, my mom mentioned how while I may have always been open about my pulling, I still felt isolated until around three or four years ago. I don’t know when the online communities started or when they started to pick up steam, but what matters is they’re here now and are becoming immediate answers to the question “am I alone in this?” Always remember, you’re not.