Tracking my Trichotillomania & my Goals: How Combining Two Communities Made Me Whole

Tracking my Trichotillomania & my Goals: How Combining Two Communities Made Me Whole

March 20, 2019

 by: Ellen Crupi, HabitAware Director of Awareness & recovering "Trichster"

I want to let you in on a secret, Keen family: You aren't the only community that's been helping me succeed in my ability to stop pulling hair.

Today I want to introduce you to my BuJo community. "BuJo" is short for Bullet Journaling. I believe our two communities can learn a great deal from one another about tracking goals and behavior, mindset and success.

My Struggle with Hair Pulling Disorder

True confessions.  I’ve suffered with trichotillomania, trich for short, for four decades.  In middle school, while waiting for gym class to start, I pulled one piece of hair right out of my head.  I got this kind of zinging feeling. I don’t know why I pulled that single hair, but afterwards I was hooked.  

That was the start of my hair pulling disorder.  I had no idea I was doing any damage, plus most of the time I wasn’t even aware I was pulling.  Soon after my pulling started, I was at the hair salon sitting in the hair stylist’s chair. She parted my hair down the back of my head and that’s when I knew something was wrong.  She called my mother over and the two women were looking down at me. “Sandy, there is something wrong with Ellen, she has two bald spots behind her ears, see?” My mom asked, “Ellen, what did you do?”  I answered with, “Anne Siino put gum in my hair and I had to pull it out.” They were satisfied with that answer. But I was terrified.

For those of you new to trichotillomania, it falls underneath the umbrella of Body-Focused Repetitive Behaviors (BFRBs) that include dermatillomania ( skin picking) and nail biting.  These behaviors are serve a purpose for those of us who suffer as they are self soothing behaviors and according to TLC Foundation for BFRBs, nearly 5% of the population have a BFRB.

Life went on.  I tried to stop pulling but stopping was impossible.

Finding the Keen Awareness Bracelet

Fast forward to May 2017.  After a 3 hour, non-stop hair pulling session, I googled “breakthroughs in Trichotillomania” and up popped Keen by HabitAware.  

“Keen is a smart bracelet that helps you take control of hair pulling, skin picking & nail biting,” said the search results. I kept reading to learn that Keen was created by a fellow “trichster” who grew up with the same thing as me! I decided to give the Keen smart bracelet a chance.  Keen is a tool that senses your picking or pulling behavior. Immediately I began to notice when my hands were in my hair.  The gentle vibration was like a hug on my wrist, strengthening my awareness, so I could put my hands down and make different choices.  Keen is a tool, not a cure, and while the awareness was immediate, the hard work of controlling my hair pulling was not.

Finding my "BuJo Buddies"

A little after I discovered Keen, my friend Amy told me about bullet journaling by Ryder Carroll.  For those of you new to bullet journaling, it’s an analog way of keeping track of things we’ve done, our to-do’s, and the things we aspire to do.  It is much more than a to-do list. Bullet journaling allows you to see what has your attention. With that awareness you can then decide how you want to spend your time. Ryder Carroll is the creator of the bullet journal.  Watch this video to get the gist.  

I was completely intrigued, especially as Keen was beginning to heighten my awareness and free my energy. For as long as I could remember, I struggled with organization.  Amy said that all you need is a notebook and a pen and agreed to help me get my bullet journal set up. With newfound vigor, I was excited to begin.

On the meeting day, Amy brought two other women interested in bullet journaling.  What was supposed to be a one time gathering organically turned into a monthly BuJo meeting, which continues to this day!   

In our BuJo group we discuss productivity along with sharing how we use our journals -- what’s working, what isn’t, all the while learning from each other. We even named our group:  Bujo Buddies. 

Combining Two Powerful Tools: Keen + BuJo

As my confidence grew with Keen, I confessed my hair pulling secret to my bujo group as well as my desire to work with HabitAware.  I was terrified at how they might react. Would they think I was a freak?  Would I lose my new friends? Instead of rejection, I received praise and love for sharing my vulnerability and bravery. My BuJo buddies encouraged me to reach out to the HabitAware team.

After careful preparation, I reached out to Aneela and Sameer and went from Keen family in May to HabitAware team in September of 2017!

I realize that I had two powerful tools - and communities - in my corner:

  1. Keen & my Keen family: my own personal guard, making me aware of when my hands began entering a danger zone, and
  2. My Bullet Journal & my BuJo group: where I could keep myself organized as well as a place where I could document my hair pulling objectively, trying out different strategies to get control.  

Guess what?  I wasn’t the only one using bullet journaling to take control of my BFRB! In October 2018, Ryder Carroll’s book, The Bullet Journal Method was released.  In the introduction, Ryder features a women named Sandy who shared that she suffers with dermatillomania compulsively picking at her fingers. From the book:.  

HabitAware's Keen bracelet combined with Bullet Journaling help you prepare to take control.“Soon Sandy noticed that journaling garnered more benefits than just keeping her organized and sane.  All her life, she’d suffered from a condition called dermatillomania, also known as compulsive skin picking disorder, that she’d been ashamed of her whole life.  For Sandy it was mostly concentrated on her fingers. She’d cancel meetings and interviews because she felt her fingers looked horrible. Sometimes she couldn't sleep because of the pain, and she’d constantly drop things and was unable to do the simplest of tasks.  For example, she’d always ask her husband or her mom to help squeeze some lemon for her tea to avoid the biting pain of the acidic sting.
After bullet journaling for a few months, she found herself in the kitchen, tears welling up in her eyes.  She looked down at her hands, finally squeezing the lemon, and realized that her fingers were no longer covered with wounds. With every line, letter, and notation she made, she kept her hands busy and let them slowly but surely heal." 

When I read this my jaw dropped.  Someone else with a BFRB found help by using a bullet journal.  And her story is in a Ryder Carroll’s published book!

HabitAware-Bullet-Journal-Keen-TrackerRyder Carroll visited Washington DC, my hometown, and the BuJo Buddies got to see him in person!! I was so touched by the intimate story Ryder Carroll shared with the audience that evening: In elementary school Ryder was diagnosed with ADHD.  Learning was difficult and keeping track of what he needed and wanted to do was nearly impossible.  Over the years he developed a method to help keep himself organized, which he later introduced online as Bullet Journaling.  Very quickly a huge BuJo community was born.

 

 

 

 

BuJo + Keen Parallels

There are many similarities between Ryder, founder of Bullet Journal, and Aneela, founder of HabitAware.  

  • both struggled with mental health conditions
  • both compensated for their disorder
  • both invented tools that to take on their disorders & change their lives
  • both decided to share their tools so they could help others  

That is why I want to connect the Bullet Journal Community and the Keen family.  With my Keen habit tracking bracelet, I was able to develop my physical awareness muscle and over time, retrain my brain.  With bullet journaling I was able to document, track, review and adapt strategies to move towards recovery. And I can proudly share that I am 95% pull free for nearly 18-months!

I know the Keen family & the BuJo community can learn from one another. Here's some tips I've learned that can help us both as we prepare to take control of our behaviors & our goals so that we can SUCCEED!:

Ellen’s tips for starting a Bullet Journal

Start with a notebook and pen that you want to use.  I prefer the Leuchtturm1917 Hardcover Medium A5 Dotted Notebook which you find online or at Bullet Journal.com, or use any type of notebook.  

Start simple.  Watch the 5 minute video on setup. Avoid looking at bullet journal spreads online as they can be overwhelming when you first start. The designs are beautiful but not necessary, don’t let them get in your way.  

Start with the basics.  The basic BuJo categories are:

  • Index (my fav)
  • Future Log
  • Monthly Log
  • Daily log
  • Rapid logging

The most important thing is to get all the stuff out of your head and onto paper - that is Rapid Logging.   Just because you put something down on paper, doesn’t mean you have to do it. The key: out of your head, on paper, in one place: your notebook.

Hot tip:  When you are looking at your tasks ask yourself these questions:  

  1. Is it VITAL?  
  2. Does it MATTER?
  3. What happens if this thing NEVER GETS DONE, EVER.  Will that matter? If it doesn’t then maybe you should cross it off.  

 

Using Bullet Journaling to Track Trichotillomania & DermatillomaniaStart a section in the back of your book just for your BFRB recovery.  Go to the very last page of the book and add the date and a title, like My BFRB Journey or whatever makes you feel good.  As you need more space you’ll move in your bullet journal from right to left towards the middle.  Bullet journalers call this a Collection. In this collection, you’ll write down your triggers, your danger zones, strategies to try, and make notes on what works, what didn’t and things to try next.  Just because one strategy didn’t work today doesn’t mean it won’t work tomorrow. Having this journal will allow you to review, reflect and bring in and out what suits you. This collection is a complement to tracking your behavior in the HabitAware app.  

 

Ellen’s Tips for Starting with Keen

Start with one Keen and one trained area.  Even if you pull or pick with both hands in multiple areas, start with one Keen and one area.  Starting with one helps you get to know Keen, and get to know yourself. Give it about a week before adding another area or a second Keen.  

Charge your Keen and your phone next to each other at night.  You’ve got to remember to wear Keen and keep it charged up.  The best practice is to charge your phone and Keen near each other every night.  In the morning when you grab your phone, grab your Keen and put it on.

Consider Keen’s vibration a hug on your wrist.  Every time Keen vibrates congratulate yourself for being aware.  Associate Keen’s gentle vibration as a hug on your wrist. When you feel the “hug” that’s your high five cue to put your hands down and do something else, like deep breathing.  That is where your bullet journal comes in handy. Rapid log ideas of what you can try, then track if that worked or not. Do not berate or punish yourself. Putting on Keen is an act of self love and the vibration is hugging you along the way.  

 

Putting It All Together: Keen + BuJo

  • Now that you are armed with Keen awareness, when you feel that hug, pause and ask yourself:
    • How am I feeling?  Nervous, bored, tired, excited?
    • Where am I?  At my desk, car, bedroom, classroom?
    • What am I doing?  Watching TV, reading, studying, talking on the phone?
  • Write down your non-judgmental observations in your bullet journal
  • Identify your danger zones ie:  car, desk, tv, bathroom
  • Rapid log strategies you can do when in those danger zones
  • Make a list of supplies to help you, like a survival basket of fidgets, gloves, hats, etc.
  • Collect and then place survival baskets where you need, so you are prepared
  • Review what worked, what didn’t, and adjust
  • Congratulate yourself along the way - draw or put smiley face stickers or a thumbs up in your journal

And when you slip up, which you will, just turn the page and start again.  No judgement.

Hot tip:  Together is better!  Grab a friend or two and start your own mini BuJo support group.  It helps keep you accountable and it’s fun too. Here’s my daughter with her BuJo buddy.   

So, give it a go and  let me know how you are BuJoing with Keen awareness.  

Energetically,

Ellen

 


About The Author

Ellen Crupi Director of Awareness - HabitAware - TrichotillomaniaEllen Crupi has been bullet journaling nearly two years.  She works with HabitAware to spread awareness of BFRBs and help reduce the mental health stigma. Ellen is passionate about healthy living, exercise and dark chocolate.  You can find her at ellen@habitaware.com.


wishing you love, strength & awareness,

 
About Keen by HabitAware
HabitAware makes Keen, a smart bracelet that helps manage nail biting, hair pulling, thumb sucking, and other subconscious behaviors. Customized gesture detection brings you into awareness and helps you develop healthier habits.
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