Do you know what a BFRB is?
Do you know anyone with one?
If you answered “no” to one or both of these questions, then I’d highly recommend that you keep reading to help the people in your own life who are struggling with one.
Current research shows that approximately one in 20 people will have a BFRB in their lifetime. I think the number could be even higher, considering that most people who have a BFRB don’t even know that there’s a name for the behavior they’re doing or that treatment is available.
In the 20 years that I’ve specialized in treating this population, I’ve become passionate about spreading awareness about BFRBs. But I realized many may not understand why this is so important.
BFRB stands for body-focused repetitive behaviors. These behaviors include compulsive skin picking, hair pulling, nail biting, cheek biting, cuticle picking, and other repetitive behaviors that damage a part of the body. While Hair Pulling Disorder, otherwise known as Trichotillomania, has been in the DSM (the manual used to diagnose psychiatric conditions) since 1987, Skin Picking Disorder, also known as Dermatillomania or Excoriation Disorder, was not added to the DSM until 2013. Despite how common these disorders are, and how long they have been recognized as disorders, most people have never heard of them. This includes teachers, school counselors, and even therapists and doctors.
The fact that people don’t know about these disorders significantly increases the problems faced by someone with a BFRB. Skin picking and hair pulling, the two most common BFRBs (besides nail biting, which rarely causes significant distress), can lead to bald spots, missing eyelashes and eyebrows, and skin lesions and scars all over the face and body. In severe cases, these disorders can lead to life-threatening skin infections and abdominal blockages from swallowing hair.
These effects of the disorders are obviously not desirable to the person doing the behavior and often lead to embarrassment, isolation, and frustration about what they have done. While the behaviors tend to be self-soothing and/or regulating for their nervous system, they are also incredibly maddening to the people who do them. Many compare these behaviors to an addiction, as it can feel impossible to stop, yet the behavior causes incredible disruption to functioning and significant distress.
Yet, in spite of all of these negative effects, most people with a BFRB say that the shame that comes from continuing to do the behavior despite all of these consequences is the single biggest source of their distress. Not the bald spots or scars, but rather the feeling of being weak, or a failure, or a freak because they cannot stop.
So what does all this have to do with awareness?
When someone who has been picking their skin or pulling their hair for decades finally learns that there’s a name for what they’re doing, they often feel an immediate sense of relief. They’ve spent years believing that they were the only one doing this, and that there must be something seriously wrong with them.
Anyone who did know that they were doing the behavior, but didn’t know it was a BFRB, likely told them to just stop and asked why they were doing this to themselves. Well-meaning parents even punish their kids for this behavior, which just makes them hide it and become more ashamed of it.
Imagine instead a world where talking about a BFRB was the same as talking about ADHD, anxiety, or depression. Of course, there is still stigma associated with any mental health disorder. We often hear the advice given to a person who is depressed to just get out of bed and do things to feel better. But the frequency and intensity of the stigma associated with BFRBs is considerably higher than with most, if not all, other psychiatric disorders.
So, back to imagining this world where everyone knows what BFRBs are and understands that the people who do them do not want to do them any more than someone with ADHD wants to get distracted.
I’ve seen hundreds of children, teens, and adults who have a BFRB in the last 20 years, and I could count on one hand the number who have been met with support and understanding right away from those in their lives. More commonly, I see women in their 20s, 30s, 40s, and older who have been doing these behaviors since they were 10 or 11. At first, they might not have thought much of it, but once they had noticeable hair loss or spots all over their skin, they started believing that they weren’t like everyone else. Most were scared to ever tell anyone, because those who did notice just told them to stop, or commented about how much prettier they looked with long hair.
These women (and some nonbinary folks and even a few men) grew up believing that they were fundamentally flawed and could never live a normal life. They missed pool parties where they couldn’t cover their skin or hair loss. They didn’t pursue romantic relationships because it was too hard to have to show all of themselves to someone else. Many of those who did go to parties and even got married were experts at hiding the damage caused by these disorders. I can’t even count the number of women who told me that their partners don’t even know that they do this behavior every single day.
So, in this imaginary world, these people would have had something very different. They would have had someone who recognized what was happening. Instead of being told to stop, they might have been told, “I know you don’t want to do this and that you can’t stop. This is not a matter of willpower, and you’re not alone.”
Instead of hiding their hands, hair, or skin, they might have felt safe enough to talk about what was happening. Instead of spending years believing that something was fundamentally wrong with them, they might have learned that BFRBs are real, treatable conditions that many other people experience, too.
This is why awareness matters. It literally saves lives, and makes those lives so much better.
Awareness doesn’t make a BFRB disappear. It doesn’t take away the urge to pull or pick, and it is not the whole treatment. But awareness can take away some of the shame and isolation that make these disorders so much harder to live with, and help those who have the disorders find the help they need.
And awareness isn’t just the responsibility of people who have BFRBs or the professionals who treat them. It’s something all of us can be part of.
- Learn what BFRBs are (The BFRB Foundation is a great place to start)
- Talk about them without judgment.
- If someone in your life has a BFRB, resist the urge to tell them to stop.
- Instead, let them know that you understand that they aren’t choosing this and that you’re there to support them.
- Share posts on social media to spread to a wider network of people.
You never know who in your life is quietly struggling with a BFRB. You may be the person who helps them realize, for the first time, that they aren’t alone.
And often, knowing that can be the beginning of everything changing.
Today, October 1st, starts BFRB Awareness Week, which is a great time to spread awareness. On our social media sites and The BFRB Foundation’s sites, we will be posting more about these disorders to help educate and spread awareness.