I often say that growing up with body focused repetitive behaviors (BFRBs) are extremely difficult. I remember sitting in at my desk in high school, the bell would ring, I’d gather up my books, look down and see evidence of my hair pulling all around my feet. Immediately I’d feel that pit in my stomach and think, “oh no, did anyone see me do that?"
Last January my public school district, Montgomery County Public Schools (MCPS), the largest school district in the state of Maryland, held its 2nd annual Mental Health and Wellness Forum. It is great to see school districts recognize the need for information and action on how mental health and wellness affects our students.
I was thrilled to participate in bringing awareness of BFRBs and equally delighted to have Christine Adams, journalism major at Syracuse University, report on this event. Here it is, in Christine’s words.
Energetically,
Ellen, Director of Keen Awareness & recovering "trichster"
~~
By Christine Adams, Syracuse University, Journalism
On January 12, 2019, at Earle B. Wood Middle School in Rockville, MD, families, students, parents and educators from the Montgomery County Public Schools (MCPS) attended the second annual Mental Health and Wellness Forum. The event kicked off with Jill Ortman-Fouse, former member of the MCPS Board of Education, as the Keynote speaker. Ortman-Fouse addressed difficulties among the MCPS system in how educators treat and talk about mental health and wellness among students.
After this keynote, attendees chose one of two breakout sessions concerning different topics on Mental Health and Wellness. Ellen Crupi, along with three volunteers, Dr. Kathy HoganBruen, Pam Hjelle, and Alecia Rendon held a panel on Body-focused Repetitive Behaviors, titled, Self-Soothing Behaviors vs. Self Harm: Know the Difference.
Body-focused repetitive behavior (BFRB) is a general term for a group of related disorders that includes hair pulling (trichotillomania), skin picking (dermatillomania), and nail-biting (Onychophagia). These behaviors are not habits or tics; rather, they are complex disorders that cause people to repeatedly touch their hair and body in ways that result in physical and emotional damage. The origin of these disorders is unknown. However, research does show they tend to run in families. To date, there is no cure.
While these behaviors cause both emotional and physical damage, it is incorrectly assumed that BFRBs are self-injurious behaviors such as cutting. According to the TLC Foundation for Body-Focused Repetitive Behaviors’ Scientific Advisory Board, “Although BFRBs may reduce negative emotional states for some people at various times, they are rarely engaged in to intentionally produce pain as in the case of cutting. In fact, BFRBs are often engaged in without any, or very little, conscious awareness. Rather than self-injury, BFRBs are self-soothing behaviors that calms one's nervous system.”
Nearly 5% of the population has a BFRB, according to the TLC Foundation, and these disorders are likely unreported. The onset typically begins in adolescence/teenage years and can become chronic staying with the person throughout their lifetime. Extremely hard to control, these behaviors cause embarrassment, shame and can lead to isolation, anxiety and depression thus interfering with one’s quality of life. In essence, BFRBs are one of the most common yet misunderstood mental health disorders that people often are afraid to talk about.
Crupi, who lead the panel, is no stranger to BFRBs, as she suffers from trichotillomania and is a fellow “trichster.” Crupi’s struggle with trichotillomania began in gym class, at age eleven. She remembers being bored and waiting for her activity to start. Crupi reached her hand to her head and started playing with her hair. Soon, she felt a uniquely thick strand and pulled it out. From then on she was hooked, and that was when her hair pulling disorder began.
Throughout the next 40 years, Crupi couldn’t resist the urge to pull out her hair. After each pulling episode, she felt upset, embarrassed, and shame, no different from any other person afflicted with a BFRB. Crupi and many other who suffer explain the feeling of being in a trance-like state, not even being aware of how long or how much damage they caused themselves. The continued pulling or picking eventually leads to fear that someone will notice their lack of hair, be it a bald spots on their head or lack of eyebrows or eyelashes, or the skin wounds from those who compulsively pick.
Fortunately, in May 2017, after a three hour pulling episode, Crupi googled, “breakthroughs in Trichotillomania” and stumbled upon Keen by HabitAware. Keen is “a smart bracelet that helps you take control of hair pulling, skin picking & nail biting.” Immediately, she bought the product and her life with trichotillomania changed forever.
While there is no cure for BFRBs, the panel discussed approaches that are shown to be effective treatments. Dr. Kathy HoganBruen explained how Cognitive Behavior Therapy (CBT) is used in three steps.
The first step is known as the “Assessment.” The therapist assesses what the patient is thinking and feeling while doing their personal BFRB by asking them questions such as:
- “How are you feeling before, during and after?”
- “What are your triggers?”
- “Were you aware or not?”
- “Were you fixing something about your appearance?” and
- “Were you excited, nervous, upset, etc...?”
In this way Dr. HoganBruen, and other CBT therapists, gather an understanding of the patient's process and behavior.
The second step is identifying the patient’s motivation by asking, “how will your life be different if you reduced or stopped your BFRB?” and Why do you want to change?”
Motivation is critical because the patient has to want to make a change for change to happen. It isn’t uncommon for a parent to send a child to treatment for the purposes of “fix my child.”
Awareness is another key aspect of the process as you can’t change what you don’t know is happening. This is where the Keen bracelet can be a helpful tool as it brings awareness to the person by gently vibrating as the person begins to pick or pull, thus building that awareness muscle.
The third step is the individualized treatment plan. Here, therapists suggest strategies to interrupt, prevent and reduce the behavior. Some suggestions include: removing or covering mirrors, getting fidget toys that give the patient a similar sensation and occupy the hands, and putting on hats, gloves or bandaids on the fingertips to block the behavior. Another treatment approach is habit reversal therapy, where you replace the skin picking or hair pulling with a healthier habit.
The panel also explored the challenges of being a parent of a child with a BFRB. Pam Hjelle’s daughter, Jessi, has trichotillomania. Hjelle shared that she and other direct family members suffered with trichotillomania at some level in their lives. Her daughter Jessi, at age 16, went to her mom and explained she couldn’t stop pulling out her hair. Hjelle shared she was frightened and wanted to “fix” her daughter. Hjelle quickly realized this was the wrong approach. She explained to the audience that she found support groups, therapy, and other approaches looking for solutions, but Jessi didn’t have the motivation to stop pulling her hair. Educating the school was another area that Hjelle spent time.
Eventually, Hjelle and her husband attended the annual TLC Foundation Conference, dedicated to connecting those with BFRBs. At this conference they found other parents just like them, and realized “they weren’t alone.” They learned where to go, who to see and strategies for parents on how to cope as a parent of a child with trichotillomania. Hjelle exclaimed, “It was a liberating and enlightening weekend.” The next year, Jessi went to the annual TLC conference with her parents. Jessi found that she wasn’t the only one with this disorder and made friends who continue to be good friends to this day. After the conference, the Hjelles family worked together, “to strengthen everything around Jessi,” just like you strengthen the muscles around a bad knee, and they are proud of being part of the TLC community. After two years, and a lot of hard work, Jessi is 95% pull free.
Another panel member, Alecia Rendon, shared her personal journey as a trichster with the attendees. Rendon explained she started pulling out her eyelashes when she was 7 years old. At first, she wasn’t aware of her pulling, but quickly, the habit transformed. Without notice, Rendon would often find she was missing sections of her eyelashes and her eyebrows. Her parents didn’t understand what was happening or how to help. Rendon’s parents, like most, would tell her, “just stop” or “go find a hobby."
Rendon, now a young adult, shared a personal story with the audience about how she and her mom would regularly video chat. Rendon would fear that her mom would call out her lack of eyebrows and lashes, and when her mom did, Rendon would become deflated, feel rejected and simply didn’t want to continue her call with her mom.
During one of those calls, after Rendon’s mom pointed out her daughter’s lack of eyebrows and lashes, Rendon spoke up. She said, “Mom, you bite your nails, right?” And her mom acknowledge her nail biting. Rendon continued “Mom, can you just stop biting your nails? This is the same for me with my pulling. Mom, you have a BFRB too.” Rendon shared this was a scary thing to address, but in the end it helped both mother and daughter.
Rendon also recalls when she shared her hair pulling secret with her husband, when they first started dating, and he responded by saying, “My mom has breast cancer and doesn’t have hair and I still love her the same, so why would I not love you the same?”
Today, Rendon still struggles with her hair pulling. But she also now has a loving husband, a mom who understands, and a community to rely on. At TLC, Rendon learned to understand that these disorders are more common than you think, and they do not discriminate affecting anyone no matter their race, age or financial means. Now, Rendon is a TLC ambassador helping to spread education and awareness of these disorders. With the audience, Rendon shared that, “It is okay if you bite and pick and pull. Not everyone is bothered by it. But if these disorders are preventing you from living your life, going to school, going to work or wrecking havoc on your emotional wellbeing, there is support and you are not alone.”
In the end, all the panel members agreed that it’s important for parents and educators to understand that BFRBs are not something that can be stopped without help. These disorders should be taken seriously, like any other mental health disorders, because they affect one’s self esteem, inhibits one's social, emotional and educational success.
For more information and how to get help visit:
- www.bfrb.org,
- www.habitaware.com,
- Facebook Parents Online Support Group,
- TLC Tumblr by their Teen Task Force,
- TLC-Teen run Facebook Online Support Group
About Christine Adams
