Used to be, when people couldn’t stop pulling their hair out, it was simply termed trichotillomania. Now, it’s a whole family of behaviors called BFRB, meaning Body-Focused Repetitive Behaviors. And it can start with a single eyelash, or one hair pulled from the head.
BFRBs usually start around puberty. They can manifest in a number of different ways, from hair-pulling to body hair plucking to skin picking. Once begun, BFRBs can become an overwhelming need, a calming resource that can extend all the way into adulthood. And, in the most severe cases (often seen in kids) it can result in baldness, scarring and infections.
BFRB Meaning — Some Facts
According to the organization The TLC Foundation for Body-Focused Repetitive Behaviors, research indicates about one or two out of every 50 people experience trichotillomania in their lifetime. It usually begins in late childhood or early puberty. In childhood, it occurs equally in boys and girls, but by adulthood, 80-90% of reported cases are women.
Although some cases of non-suicidal self-injury (NSSI) can involve hair pulling, trichotillomania and other BFRBs are a completely different category and approached as a DSM-5.
The DSM-5 diagnostic criteria include:
- Recurrent hair pulling, resulting in hair loss
- Repeated attempts to decrease or stop the behavior
- Clinically significant distress or impairment in social, occupational, or other areas of functioning
- Not due to substance abuse or a medical condition (e.g., dermatological condition)
- Not better accounted for by another psychiatric disorder
Jennifer Raikes, the executive director of The TLC Foundation for BFRBs, knows about trichotillomania from firsthand experience.
“We don’t know what causes trichotillomania or other BFRBs,” Raikes tells Parentology. “We do know there’s a genetic component. These behaviors run in families — like mine.”
Raikes continues, “My mom, sister and I all have trichotillomania, and now my young daughter is struggling with skin picking. Some people can associate the onset of pulling or picking with a stressful event, but for most of us, it seems to come on much more randomly. “
There’s no one specific way BFRBs begin.
“The most common ages to start pulling are shortly before puberty, though it can start much younger,” Raikes says. “A number of people have told me they started pulling out their eyelashes because they wanted to make a ‘wish on a lash.’ They plucked one, and then found they kept on pulling at them. Or a child might pull a hair to look at under a microscope in science class.”
Often, people with BFRBs suffer alone. That was Allison’s situation.
“I was undiagnosed for seven years because neither I nor my parents knew about trich,” she tells Parentology. “But however isolated you may feel, remember others like you exist. I learned about trich through a high school newspaper article and discovered I’d been in marching band with another trichster for three years with neither of us knowing about the other.”
What’s It Like to Have a Child With a BFRB?
Parents with a child dealing with BFRB definitely have to educate themselves, as BFRBs aren’t well known or discussed.
“It’s very difficult to be a parent of a child with a BFRB.,” Raikes says. “Even with all the expertise I have, I still find it painful and confusing to try and help my daughter. “
Still, Raikes reassures, “You and your child don’t have to go through this alone. There are communities of support that can be found through our organization and private Facebook groups like Trichy Picky Parenting.”
Kristen, a mom in Los Angeles, advises, “Learn all you can about your child’s condition, then ask them about what they’re going through. The key is openness and understanding, rather than attempting to fix the problem.”
Another mom, Lucy, says, “You’ll be shocked at the influence you have on your child and their ability to deal with this disorder. Your child probably seeks to please, but continually feels like they’re failing you. You’re not to blame for the disorder, but you are a big factor in helping your child work through it. Dealing with it will be a necessity, so be open, talk about trich and don’t ignore it.”
Current Research and Treatments
Trichotillomania may run in families, but a predisposition toward BFRBs involves other factors, including temperament, environment, age of onset and family stress.
BFRBs even occur in the animal kingdom. Apes and monkeys will overgroom themselves, birds pluck out their feathers when they’re unhappy, mice pull their fur out and dogs or cats lick spots until they’re raw. Researchers have often used animal models for BFRB research, even finding a gene both mice and human trich sufferers sometimes have in common.
A review (2016) in the American Journal of Psychiatry found: Boredom may also trigger pulling in some individuals. This led some to hypothesize pulling may similarly help modulate negative emotions brought on by a feeling of perfectionism characterized by an unwillingness to relax. This theory suggests perfectionism leads to feelings of frustration, impatience and dissatisfaction when standards aren’t met, particularly when experiencing boredom because productivity is impossible. Pulling may therefore function as a means of releasing tension generated by these emotions.
The review suggests habit reversal therapy (HRT) as the best course of action for trichotillomania. Habit reversal therapy has demonstrated benefit for trichotillomania, but finding someone trained in habit reversal therapy is essential for appropriate treatment outcomes.
An exciting trich discovery was made in 2009. Published in General Psychiatry, the randomized, double blind study tested doses of the amino acid N-acetylcysteine. It concluded that:
This study, the first to our knowledge that examines the efficacy of a glutamatergic agent in the treatment of trichotillomania, found that N-acetylcysteine demonstrated statistically significant reductions in trichotillomania symptoms. No adverse events occurred in the N-acetylcysteine group, and N-acetylcysteine was well tolerated. Pharmacologic modulation of the glutamate system may prove to be useful in the control of a range of compulsive behaviors.
Unlike other, seemingly similar disorders, such as obsessive compulsive disorder (OCD), BFRBs weren’t helped by selective serotonin reuptake inhibitors (SSRI), or other medications. There’s no FDA approved drug for it, and off label use of drugs have performed no better than placebo.
How to Find BFRB Resources
The gold standard for resources for BFRBs is, of course, BFRB.org. The TLC Foundation runs conferences profiling the latest research and professionals. Its Young Adult Action Council offers a video designed to help parents communicate better with their child about BFRBs.The site also offers advice for things that might not have crossed your mind.
For example: finding a hair stylist who’s experienced and non judgemental.
“You can find a world of resources at BFRB.org, including referrals to therapists who are experienced in treating BFRBs, local support groups, online chat communities for you and your child, understanding hair stylists, news about local educational events, and many self-help tools,” Raikes notes.
BFRBs remain a bit of a mystery, and studies are ongoing to find answers. In the meantime, you’ll have to be your child’s advocate and guide.
“It’s important to educate yourself about trichotillomania and its treatment, because most of the doctors and therapists we turn to for help only know a little,” Raikes says. “You need to become the expert in order to advocate for your child. We offer a “Getting Started Guide” and another important tool is the “Expert Consensus Treatment Guidelines” , which you can share with your doctor or therapist.”
The most important thing in your parental toolbox is making sure your child doesn’t feel shame. A BFRB often feels calming and trance-like to them; it’s not self-injury.
“There are treatments and self-help tools that do help, but we don’t yet have all the answers,” Raikes says. “What we can prevent is the shame and suffering that comes from isolation and ignorance about BFRBs. I wish none of us had to deal with these problems, but they do serve as a reminder of some of the basic lessons in life.”
Natalie in Indiana probably put it best:
“Having trich and dermatillomania has helped me realize that how I look on the inside is way more important than how I look on the outside.”