100 Changemakers for 100 days of BFRB Awareness
My main BFRB is I scratch at the skin on my hands. While I am now more aware of when I scratch, I also unfortunately do a lot of my scratching in my sleep. This started when I was 19. At first, I didn’t know what was happening. In the morning, I would just see cuts in oddly specific places on my hand, and blood all over my sheets. I was scared. I felt weak, like I was not in control over my own body. It hurt to cut lemons, wash the dishes, even hold a pencil. Each night, before getting into bed, I needed to psych myself up, try to be brave, not knowing what might happen.
Whenever people saw my hands, I didn’t know how to explain to them that I seemed to be the one who was causing this. I would lie. I knew I wasn’t fooling anyone, but I didn’t have any other explanation. As a Chinese Canadian man, studying civil engineering, I had no concept of mental health. All the feelings of fear and isolation led to insomnia, panic attacks, and eventually hospitalizations. I saw various doctors, counsellors, and psychologists but the most they could offer is that I have anxiety.
This would remain a secret until I was 27 when a random facebook post introduced me to the BFRB term. I reached out to the person, and we started a local weekly BFRB peer support group. For the first time I had some I could talk to, who understood. The support group turned into Fidget, a podcast project to learn as much as I could about BFRBs.
I was slowly replacing my compulsion to scratch with one to share my experience and hear from others. I started meeting strangers off the internet who also wanted to connect and share their BFRB stories. Life can be so strange like this: the disorder that made me feel so lonely for so long was now connecting me with people all around the world.
Much of the loneliness created by my BFRB was the feeling like I was hiding a secret from my family and friends. My parents had picked me up from my first hospital visit, but for 8 years, we never discussed my skin. It was still really hard for me to find the words to explain my BFRB to my mom, but I had a new tool in my toolbox. During the Christmas of 2020, I sat her down on the couch, and pushed play on a Fidget episode. After listening together, I asked “Do you have any questions?” A few months later, we’d go on to record an episode together.
The podcast pushed me to attend my first ever virtual BFRB conference where I met people like Aneela and Ellen from HabitAware. The conference made me realize I had so much more to learn on my BFRB journey. The whole week after the conference I couldn’t sleep because I had so many ideas for the podcast, so I decided to quit my engineering job in order to interview as many people as I could and learn more about my BFRB.
These people I interviewed helped me cultivate compassion for myself and my BFRB. It isn’t my body breaking down and attacking itself, it is a coping skill my body learned to survive. It is my body trying to tell me something, but I never listened. I now see my BFRB like an old friend, one that’s not afraid to call me out when I’m being unreasonable with myself, when I’m pushing myself to do too much. This was such an important shift in my BFRB journey that I made it into Low Fuel Light, an animated short with the help of my new BFRB friend Cheyenne. I used to try to convince myself that I’m strong despite by BFRB, but after meeting so many other BFRBers, I now know that I’m strong because of it.
Along my journey, I found a way to help myself, but I wanted to start helping my new friends too. I summarized my ideas into a presentation and I started hosting support groups and workshops. I’m currently completing my Masters of Counselling Psychology to help people with BFRBs full time. I currently work as a counselling intern at Island Clinical Counselling where I support individual clients and run the BFRB support group. I have also teamed up with a group of professionals to run a continuing education workshop, and I run a BFRB consult group where clinicians come and discuss their challenging case studies as a way we can all learn more about BFRBs and better serve our clients.
After years of fumbling in the dark, it is now so rewarding to help others navigate their BFRB journey. I am so excited to be a BFRB Changemaker and help more people access these resources that I never had.
Support BFRB Changemakers
BFRB Changemakers supports BFRB healing through community. Our mission is 3-fold:
- raise awareness of debilitating conditions of Body-Focused Repetitive Behaviors (BFRBs) such as compulsive hair pulling (trichtotillomania), nail biting (onychophagia), and skin picking (dermatillomania),
- increase and improve access to care, and
- advance community recovery.
Through the BFRB Changemakers Training Academy we strive to increase access to care by offering Continuing Education training to new and seasoned mental health treatment professionals.
BFRB Changemakers is a 501c3 non-profit (EIN #93-1544492). Please make a donation to support these efforts!
