"If it's not diabetes or Alzheimer's, we're not really interested." ~Healthcare Investor
"Well, at least it's not cancer." ~Health Insurance Innovation Director
(For insurance to cover) "It has to be like a heart issue, where, like, people are dying from it." ~ Healthcare Consultant
"Really? That many people? I've never heard of it. I'll have to check with my sources at Harvard Med." ~Ex-Communication Director at a National Mental Health Advocacy Non-Profit
F*CK YOU & YOUR PRETENTIOUSNESS TO DENY OUR EXISTENCE INSTEAD OF ACKNOWLEDGING YOUR IGNORANCE.
Years later, the above quotes still ring in my head. All these folks said these words to me while talking about the life-changing work we do at HabitAware.
This is me in my twenties. I wanted to die. Because I was heart broken, finally grieving the loss of my dad to cancer, depressed and hated myself for pulling out my hair. MY BFRB (trichotillomania) was LIFE THREATENING.
I know a friend who did unalive themself during the pandemic due to their BFRB & OCD. I know a friend who nearly lost her leg to infection due to compulsive skin picking.
BFRBs ARE LIFE THREATENING.
This is why we need BFRB Awareness Week.
WE NEED TO SPEAK UP!!!
This week, Oct 1-7 is Body Focused Repetitive Behaviors (BFRBs) Awareness Week. But for people with BFRBs, awareness is the key to healing too!
Nearly every medical or mental health condition has an awareness day, week or month. Even tacos and apple pie have a national day to celebrate! But WHY isn’t BFRB Awareness Week more well-known?
With Mayo Clinic estimating that 1 in 20 (5%) are affected to a debilitating degree by BFRBs, awareness is really important because these behaviors touch everyone’s lives - if it’s not you, it is surely someone you love. This is why awareness-raising efforts by the BFRB community are so important! You can't change what you don't know is happening. This is particularly true for people with BFRBs.
Body Focused Repetitive Behaviors are a mental health category of conditions where a person repeatedly and involuntarily self-grooms as a coping mechanism for stress, anxiety, boredom and other mental states of discomfort. This excessive self-grooming shows up as compulsive hair pulling (Trichotillomania), excessive skin picking (Dermatillomania), nail biting (Onychophagia), cheek biting (morsicatio buccarum), nose picking (Rhinotillexomania) or other behaviors.
I grew up with a BFRB, but wasn’t aware of it for many years! In my early tweens, as a way to cope with the sickness and loss of my dad to leukemia, I turned to pulling out my eyebrows and lashes. I knew I wasn’t supposed to, but I didn’t know how to stop. It just felt so good in the moment and left me feeling alone and distressed in the aftermath. I was ashamed and covered up this hair pulling secret with a black eye pencil for more than 25 years.
In my 20s I learned that compulsive hair pulling is a mental health condition, medically known as Trichotillomania. I was no longer alone, but the stigma around mental illness forced my silent suffering and I clutched tighter to my secret. I was in a very dark place and this new tidbit of information of just how “messed up” I was, was the tipping point that led to a suicide attempt.
"It's the secret that makes us sick." ~Aneela Idnani
It’s this shame-fueled secrecy that makes BFRBs the most common mental health disorders you’ve never heard of. If you’ve never heard of BFRBs, then you wouldn’t know if you’re living with one, you wouldn’t know how to help a loved one with one, and you wouldn’t know that you shouldn't ask, “Ew that’s gross, why can’t you just stop?” or “What’s wrong with your skin?” or “Why are you wearing a hat…do you have cancer, or something?”
This BFRB Awareness Week is a time for the community to get together (mostly online) to share stories of hope, share strategies and educate the community at large. When we come together something amazing happens: we realize we are not alone, we are not freaks…we are just like everyone else. The stories we told ourselves because of our BFRBs are no longer true. The heavy BFRB burden begins to lift.
It’s the secret that makes us sick through spending so much energy hiding and fearfully thinking about other people’s judgment. When we share our stories, we shatter the shame holding us back.
Sharing our stories of struggle and triumph with BFRBs builds connection and compassion with those around us. Knowing how we feel helps our loved ones understand what’s really happening, and how best to support healing. The parent who orders “just stop!” now has the knowledge to understand just how difficult it is to stop an involuntary behavior - it’s like asking someone with Diabetes, another chronic medical condition, to “just stop” not processing insulin. Instead, when they see their child from across the room, with their hand in their hair, on their cheek or in their mouth, they can give their child a hug, or a voice of loving encouragement.
Awareness-raising efforts also signal the medical community to take notice and take this condition seriously by way of funding research and formulating treatment strategies. We in the BFRB community have largely been ignored. When I went to a therapist in the early 2000s, I shared that I pulled out my eyebrows and lashes and was dismissed, “Let’s talk about your father…” While today there are at least some well-trained treatment professionals, we still need more! In recent years of starting a company to help the BFRB community, HabitAware, I’ve had well-respected employees of major insurance companies tell me, “Well, at least it’s not cancer.”
The ugly truth is that hair pulling, skin picking and nail biting can be life threatening - It nearly drove me to the edge in my 20s. The beauty is that so many folks with BFRBs are turning their pain into purpose to be the support they wished they had. As a long time community member, I can’t even count how many folks are practicing in the field of psychology. I, too, have found purpose in this “hair pulling” pain, with my work. The HabitAware team invented a smart bracelet that brings awareness to these subconscious hair pulling, skin picking and nail biting so wearers can take back control. Here again, awareness is so crucial as it is the first step of Cognitive Behavioral Therapy & Habit Reversal Training, the standards of care for healing from BFRBs. Just as BFRB Awareness Week plays a tremendous role in the healing of a community, we too are honored to do our part, helping tens of thousands in 80+ countries get their life back with the power of “keen” awareness.
Title Graphic Courtesy of Unsplash / @MBrunacr