I'm thrilled to introduce a member of the Keen family, and our online BFRB Change Collective, Jaclyn. She is one of my favorite humans and I bet soon will become one of yours too.
~Ellen Crupi, HabitAware's Director of Awareness
Jaclyn Shares Their BFRB Story
I’m honestly not sure where to start…I have 15 years of stuff swirling around and it’s hard to parse it all out. My journey with trichotillomania (compulsive hair pulling disorder) started when I was 13 years old, and I had initially pulled from my eyebrows. I soon realized I didn’t have much hair to work with there as I was already seeing patchiness a couple weeks in, so I moved to an area where hair was abundant: my scalp. I soon found myself deeply entrenched in a vicious and unforgiving cycle where I’d feel the itching impulse to pull, then I’d pull my hair for hours at a time in a dissociative state, and then afterwards I’d feel a debilitating sense of shame smack me across the face. I’d ask myself questions like, what have I just done to myself? How did that just happen? Why couldn’t I stop pulling? Then the fear would trickle in. If I keep this up, I won’t have hair anymore.
I’d obsessively examine my scalp in the mirror, scanning to try and find any early signs of bald spots. At first, I’d feel a profound wave of relief when my hair still looked thick and plentiful. By this point, I was a freshman at a new high school and had yet to make friends, and couldn’t even resist the urge to pull when I’d be in class. This was deeply mortifying, as I used to exclusively pull in the privacy of my own room, but now it seemed like I didn’t even care who saw. All I cared about during that moment was feeling a sense of escape from all the pain I felt. I’d hear voices in the hallways about the freak pulling her hair out at her desk, and was even questioned by some classmates about what was wrong with me. As searing as the pain and embarrassment was, I still couldn’t stop, or even slow down. Gradually, and then seemingly all at once, I was seeing bald patches at the top and sides of my head. The horror and panic really took effect once my private struggle and attempt at self-soothing became what felt like a public embarrassment.
It was around this time that I had to be pulled out of school, as the bullying and my trichotillomania had pushed me to a breaking point. Nothing seemed to be helping. My therapist looked at me like I had 10 eyes when I explained to her what I had been doing to my hair, and she was totally stumped about what to do with me. I had tried getting hair extensions to mask the damage I’d done, but I had only ended up pulling those out as well. I snapped rubber bands on my wrist to punish myself for the urges. My parents, not understanding the nature of trichotillomania at the time, had begged me to “just try and stop pulling.” That was super invalidating and always felt like it minimized my experience with trichotillomania. Because of that response, I felt all the more reason to hide this from everyone. If only it were that easy to just stop.
I prayed that I’d just wake up one morning and not feel the compulsion to do this to myself anymore; I didn’t know anyone else who struggled with this condition, and I genuinely thought there was something seriously wrong with me. That I was broken beyond repair and hopeless. That I’d be totally bald in just a matter of time.
After I left that high school and transferred to a new one, I tried in earnest to have a fresh start. I had gotten a wig before my first day, which felt like the strangest day of my life to date. On one hand, I felt a surge of relief that nobody would see my bald spots that I could no longer cover up anymore. But on the other hand, I felt deep, crushing shame and dread that I was 15 years old and buying a wig for myself. I spent the rest of that year feeling sorry for myself because I couldn’t play sports anymore, which had always been a huge part of my identity and self-esteem; my wig had nearly fallen off my head during a basketball game—it was obvious—and I never played competitive sports again after that day. Nonetheless, having the wig ended up being one of the biggest reasons I could get my hair pulling under control. Firstly, because I had reached what I consider to be my rock bottom when I lost most of my hair, and second because I didn’t have ready access to my scalp whenever I was wearing it. Even though I got taunted about it behind my back (and sometimes straight to my face), my wig was like a shield for me. By now I was working with a more compassionate and competent therapist, and over the course of the next 3 years, I was able to keep my hair pulling to a minimum. Something inside of me had shifted after I hit that low point of my life, and I was determined to take control of this situation rather than let it continue to control me. In time, my hair began to slowly grow back, and once I had enough hair for me to sport a very short haircut, the wig came off and I continued to move forward with my life.
To this day, I am still astounded and overflowing with gratitude that my hair had even grown back at all. I continue to have slip ups all the time, but it’s with therapy, this amazing BFRB group, mindfulness exercises, and my wonderful support system that I have found ways to manage my trichotillomania.
How did you get connected with this community, and what impact has the community had on your life?
For a long time, I didn’t know anyone who struggled with trich or anything like it. I felt really alone and isolated keeping this all to myself. Only my parents, brother, and therapist knew about it for a long time, and it was always a difficult conversation with them because I felt so misunderstood. One day, I googled “support group hair pulling” and found a directory listing for a BFRB group in the Bethesda area. I couldn’t believe it. I didn’t feel ready to join a meeting just yet, but I felt the need to do something. I decided I would reach out to one of the leaders for some extra support and words of encouragement. I was terrified about showing my face and confronting such a painful secret in a group setting, so this one-on-one felt like an easier place to start. I sent an email asking if we could talk, and we set up a zoom call soon after that. From the very first moment we connected online, I had this visceral feeling that I had come to the right place. It was this feeling of being seen and understood without having to say anything at all.
During my call with Ellen, we talked about the BFRB support group, my anxiety around joining, the deep-seated shame I was experiencing, and the HabitAware Keen bracelet. It was this conversation, and the safety I quickly felt, that planted a seed; from that moment on I knew it was only a matter of time before I'd muster up the courage to attend a meeting. I also bought the Keen bracelet after we spoke, which proved to be a useful tool in heightening my awareness around automatic urges to pull. I appreciate the gentle reminder the bracelet provides, and I still use it from time to time when I anticipate being in higher stress or over-stimulating situations. I have discovered that for me, it's this strong mix of tools and strategies (keeping a hat or a pair of rubber gloves next to wherever I'm sitting, mindfulness meditation, therapy, group, and physical exercise) that work best in managing my trichotillomania.
Being a part of this group has been life changing for me. I couldn’t stop crying during my first group – it was like 15 years of shame, self-blame, and sadness were rising to the surface for the first time. As cliché as it may sound, a massive weight was lifted off my chest after sharing my story with other incredible humans who also have BFRBs. I truly felt like I was being heard and that others genuinely got me. While everyone’s experience is different and their own, it was so achingly powerful to feel the relatability and collective pain while we all shared our stories. Having this safe space once a month has helped me to hold myself more accountable, allowed me to develop more flexibility around my slip ups, and to give myself far more compassion and understanding.
It is a beautiful experience being part of a community with such warm and wise people whom I can speak openly with and reach out to, even offline, for support. Every time I join a meeting, it feels like I’m taking in a deep breath of fresh air that I have so desperately wanted and needed. I feel very lucky to have found this group, and don’t know where I’d be without it.
Have you shared your secret with anyone or asked for support?
For many years, I hadn’t talked about my trich with anyone besides family or therapists. As Ellen has shared with me and the group, secrets make you sick. They really do.
Holding my trichotillomania secret in manifested itself physiologically for me – my chest would feel tight, and it felt like I couldn’t get a deep breath in. I felt nauseous and tingly throughout my body. I felt on edge and unable to fully relax. It’s only been since I joined this group that I’ve started opening up more to my friends and other loved ones about what I’ve been dealing with for many years. I’ve received mixed reactions, but mainly positive ones – some people just didn’t know what to say and remained largely silent, and others thanked me for sharing such a vulnerable part of my life with them.
My best friend, however, has made a major difference in helping me to reconcile a lot of my feelings and anxieties around trichotillomania. She asked me, “how can I best support you?” I was so touched by that gesture. I responded by saying that I’d love it if she were to check in on me from time to time, as I’ve never had those kinds of check-ins from another person. I can’t even explain how impactful it’s been when she will randomly text me and ask questions along the lines of “how’s hair stuff been lately?” And I feel like I can genuinely be honest with her. My friend, in addition to the group, has been helping me so much to normalize conversations around hair pulling, the urges I have, and the importance of advocating for my own needs. I am developing a much higher bar for myself when it comes to admitting I’m struggling and asking for help. And that it’s okay to not always be okay.
How did mindset impact your trichotillomania recovery?
Mindset is everything, and has been making all the difference in my relationship with trichotillomania. It wasn’t until I joined this group that I started to shift my paradigm of thinking in a way that felt sustainable. When I had stopped pulling for stretches of time in the past, my abstinence was coming from a place of fear rather than a desire for genuine recovery. I just didn’t want to be bald again, but I didn’t have any flexibility around slip ups. Classic black and white thinking. Whenever I would slip up, I’d beat myself up mercilessly and feel awful about myself. And then the cycle would continue.
During one of the BFRB group sessions earlier this year, we were having a conversation around slipping up and the accompanying shame. It was the first time I felt I could consider the gray areas rather than seeing a slip up as an indication that I’d failed, or that I’d never recover.
Whenever I do slip up, or feel the urge to pull out my hair, I am able to more clearly see that I am not defined by that moment, and that progress isn’t linear. I know I’m still growing and healing even when I slip, and those slip ups aren’t detracting from my recovery journey.
As Ellen has shared, it’s not about completely stopping but instead about managing, and that mindset shift has given me more comfort than I could’ve realized. It leaves room for me to be human. This reminder, along with my support system, gives me so much hope as I continue to move forward and heal.
What is one small piece of advice you have for us? Or if you could go back and talk to little Jaclyn, what would you say to her?
You are in no way defined by your hair pulling, skin picking, nail biting or nose picking! Even if it’s taking up a whole lot of space in your life, you are so much more. You will always be enough, and you have far more strength and willpower in this healing journey than you may even realize. You already have so much to be proud of…trust yourself and the process.
Here's a preview of an inspiring BFRB meditation that Jaclyn wrote.
If you feel inspired to re-center yourself for the sake of your BFRB, check out a clip of this meditation that Jaclyn created for the Keen family:
Blog post header photo by JD Mason
