This blog post was written by Peer Coach Gessie.
Gessie was a kid, then a teen, with hair pulling and nail biting. Now, when she hosts kid & teen hangouts, she creates a welcoming space so your kids feel SEEN. These sessions are a good mix of talking about BFRBs as much as your kids feel led, while also spending time talking about "regular life" and fun stuff, like school, pets, family/siblings, & hobbies/interests. When your kids connect with other kids who just so happen to also have BFRBs, but not necessarily have BFRBs be the main focus, they start seeing the amazingness within themselves!
I have had trichotillomania since the age of 11, totaling 15 years now. It's certainly been a journey to say the least, and I've learned a lot. Drawing from my own lived experience living with a BFRB, here are a few things parents should know about their child's BFRB recovery journey.
Your child's physical appearance may drastically change
Pulling hair and picking skin can result in bald spots, missing eyebrows and eyelashes, and scarring of the skin. It can be shocking and concerning as a parent to see your child's appearance change so drastically, especially since it can happen pretty quickly too. But remember that they are still the same child you love, no matter what they look like. Don't shame them for how they look and be open to different options. If your child wants to conceal the effects of their BFRB with hats, bandanas, wigs, makeup, etc. that is their choice. If they are comfortable not covering up anything, that is perfectly acceptable too.
There are other kids with BFRBs, your child is not alone
I can say from experience that one of the hardest parts of living with a BFRB are the feelings of loneliness and isolation. But your child doesn't have to go through this alone. HabitAware provides kid and teen hangouts as a great resource. They allow youth to ask questions of an adult with lived BFRB experience, as well as meet and connect with other kids and teens who are going through the same thing. They can talk about anything and everything, whether it be related to BFRBs, or about school, hobbies, pets, or whatever else they want. Above all, the hangouts allow kids to just be themselves without fear of judgment.
Recovery is not linear
Many people think of BFRB recovery as a destination, that the ultimate end goal is to completely stop pulling hair and/or picking skin permanently. But this is not the case. BFRBs are chronic disorders, and as hard as it is to acknowledge and accept this, there is no cure. Though BFRBs can be learned to be managed, they may never fully go away, and that is okay. I like to think of recovery as a journey, rather than believing that completely stopping pulling my hair is the “end all be all.” Over the years, I have gone through periods where my pulling has been very minimal, and I have gone through periods where my pulling has felt extreme and out of hand. Like life as a whole, there are ups and downs. BFRB behaviors may tend to wax and wane over time, this is often the natural cycle of the condition. Don't hold your child to the expectation that they could or should completely stop their BFRB behavior. All you can do is encourage them to try their best, and accept that that is enough.
There is hope!
When I was younger, I genuinely thought trichotillomania was the worst thing to ever happen to me. I can say now that that couldn't be further from the truth. I used to wonder, would I ever be able to work, find love, live the life that I want? I now know that the answer is yes! I've been working for almost six years at the same job that I love as a direct support professional for kids with developmental disabilities. I have been in a serious romantic relationship for over two years with the most loving, supportive guy, and we are now engaged! He is so accepting of me and my trichotillomania, and he's always telling me how beautiful I am. Even when I recently shaved my head and started wearing wigs. He loves me – all of me – for me, and I'm so thankful to have him when I previously didn't think it was possible to find someone like him. I travel frequently, I am a published author, and a prominent advocate. I have achieved so much, and have done things beyond my wildest dreams. Overall my life is very fulfilling.
I’m not the only example either. HabitAware’s co-founder, Aneela, turned the pain that trichotillomania caused her into a passion for helping people. HabitAware has achieved so much in terms of spreading awareness, from winning awards to presenting her own TED Talk. Another example is Barbara Lally, a fellow HabitAware Peer Coach, who is a teacher, an author, a podcast host, happily married, and dog mom. There’s even representation in the media. Megan Fox, am actress renowned for her beauty, has trichotillomania. Amy Schumer, a comedian, opened up about her trichotillomania in her Hulu show “Life & Beth.” People with body-focused repetitive behaviors are everywhere, even if they’re not outwardly talking about it.
Life may look a little different for your child, but they can still go on to lead a happy and fulfilling life, even with a BFRB.
