“I Have Trichotillomania”
My first experience with the Anxiety Resource Center was as a client participating in a support group held for people with Body Focused Repetitive Behavior Disorders (BFRBs). This is a group of grooming related behaviors like nail biting, skin picking, hair pulling, etc. that become compulsive and start to occur so frequently they cause physical and/or emotional distress.
I have Trichotillomania or Compulsive Hair Pulling. It started when I was 12 and home sick for a day from school. 30+ years later, I still pull my hair, eyelashes, or eyebrows daily. I joined the ARC support group to feel less alone and to discuss the feelings of frustration and shame that came with trying to stop, but having urges that I just couldn’t manage. Often urges would become more frequent the more I tried to count and control them as parts of behavioral interventions. Trichotillomania doesn’t tend to respond to therapy or medications for many people, and I had already tried most of them during my teens & twenties. The support group was helpful for processing all of this, as well as discussing new treatments/research as they were announced.
For years, trying to fight the urges took most of the time and mental energy that I had, so everything else in my life suffered as a result. I kind of coasted through life, participating in it the way my hair (or lack thereof) and accompanying anxiety & depression felt like they allowed. I realized that I wasn’t doing much of anything I enjoyed and I hadn’t felt joy in decades.
I’m not entirely sure when the switch happened, but at some point, I decided that I was going to live in spite of my disorder, and not let it run things anymore. Through the ARC group I was able to get more comfortable talking about it. I then began to bring it up within groups of women I knew. The national stats that declared it a “rare disorder” weren’t living out in those conversations, though. The more women I talked to about BFRBs, the more that said they did something similar or knew someone who did. Two boyfriends over the years also pulled their hair at some point in their life. I started to realize that the BFRBs weren’t all that rare but talking about them openly was.
Finding Acceptance in Myself
Once I realized this, I began a transition to be more open about my reality. I could be more helpful to the BFRB community if I talked about it rather than hiding it. I stopped counting or trying to resist pulling behaviors and just accepted it was part of me. It took time, but somehow this process freed up energy so that I could feel a wider range of emotions again. I still get nervous about someone new “finding out”, but since I talk about it and post on social media, many already know. With this change came the ability to live more authentically and to feel a broader range of emotions, something I hadn’t realized how desperately I was missing.
As I went through this process with the group, I also spoke about how this disorder eventually led to my interest in research psychology and then my career in music therapy. I’d begun to notice similarities in my understanding of hair pulling and similar sensory behaviors I saw from some of my clients. I hypothesized that BFRBs had more of a sensory component than most CBT therapists acknowledged or helped us address at the time. The concept was that the physical repetition and sensations of these behaviors helped us either stimulate or calm our body down, to find equilibrium. Clinical music therapy had been used to address sensory challenges in autistic students* for many years. Music therapists also help people develop relaxation techniques and skills. In 2009, I presented a conference session about BFRBs and music therapy strategies for the American Music Therapy Association (AMTA) conference. A while after that presentation, ARC asked me to lead a session on at-home music relaxation for their consumers, which brought me full circle and gave me a way to give back to ARC.
Using Music in Restorative Ways
Clinical music therapy is facilitated by a board-certified music therapist (MT-BC) and includes prescribed music interventions to address targeted goals. However, because music is such an accessible medium, there are still many restorative ways to use it in our day to day lives.
Because April is music therapy month in Michigan, I thought I would share a few of those concepts again. If using music to address your anxiety and attempt to relax keep in mind:
- Preferred music: Music therapists always recommend using music you like. If an album says it is relaxing, but you don’t like it, it is less likely to calm you. It doesn’t have to be super slow, either. If a song has a bad memory attached for you, skip it.
- Consider your musical history: If you spent hours in a practice room preparing for violin or piano recitals, you may not find those instrumental sounds relaxing. Similarly, songs with lyrics, or that are overly familiar to you may be less effective. As a vocalist, if I hear an instrumental song that usually has lyrics, my brain instantly alerts me to play “name that tune” and that is not relaxing to me at all. Do high pitched or low rumbly bass make you uncomfortable? Consider this when choosing music to relax to. Also consider if you were raised with certain cultural music that might contain different scales or follow different rules than typical “western” or American musical styles. That may affect what you expect music to sound like and what you might find relaxing.
- Start where you are and match your mood: Music therapists call this the iso-principal. If you’re really amped up, start with something that feels the same pace/speed as you, and then slow it down. Forcing yourself to listen to slower music right away may cause you to abandon your listening altogether. The speed of music is typically measured in beats-per-minute or bpm. The higher the number, the faster it is. When feeling anxious, you may want to start with a higher number and then work to lower. Similarly, if you’re having a really low-energy day, and need to motivate yourself, start slow and then work up to something fun & energetic. There are apps that can help you determine bpm for a song, or you can sometimes Google “_song title_ bpm”. Additionally, on Spotify if you search for “120 bpm” or “60bpm” etc., people have developed playlists of songs at these tempos. This might help you learn what feels right to you in the moment, and then what you might want to slow down to.
- Genre: This is what we call different categories of music (rap, jazz, classical, etc.) Typically, I recommend sticking with popular music, classical, easy listening, movie soundtracks, etc. that are a bit more familiar and structured. They follow the musical rules that our ears expect, which can be more grounding. Often, we avoid using jazz or “new age” for relaxation because they’re more free flowing, can be based on improvisation, and don’t musically go where we expect. When anxious, that can be jarring or disorienting. However, if these genres are something you love and listen to a lot, then follow suggestion #1. Try to be aware of what your body tells you as you listen.
- Play an instrument: While the process of learning an instrument may cause some anxiety, the physical act of playing can be calming. You don’t have to be good at playing an instrument to reap the positive benefits of making music. When playing a traditional instrument, the vibrations can also meet sensory needs, and keep hands busy, which is helpful to those of us with BFRBs. If you’re not up for the task or expense of learning a traditional instrument, there are electronic music & instrument apps that can help you learn how to follow chord charts, or play with sounds and loops, without having to master the mechanics of reading music or fingering an instrument. Bloom HD is also a great app in which you can tap and create ambient sounds and colors, which can be really soothing.
While it has been quite a while since I was able to participate as either client or clinician at Anxiety Resource Center, it was exciting to be asked back as a guest blogger. I wish you luck in your journey with anxiety and/or BFRB and hope that some of these suggestions might prove useful to you.
