Talking About Body-Focused Repetitive Behaviors Across Cultural Boundaries

A body-focused repetitive behavior (BFRB) is a general term for a group of related disorders that includes hair pulling (trichotillomania), skin picking (dermatillomania) and other less-recognized behaviors like nail biting, cheek biting, etc. These behaviors are not habits or tics; rather, they are complex psychological disorders that cause people to repeatedly touch their hair and body in ways that result in physical damage.

Members of the TLC Foundation for BFRBs Young Adult Action Council teamed up to form a diversity council with the intent to provide a forum for people from under-served populations within the BFRB community, encourage the participation of and outreach to historically underrepresented communities and ensure a safe, healing community where diversity is celebrated.

The diversity council’s first action was to conduct a series of interviews with members of different sociocultural communities with BFRBs. The goal was to shine a light on the specific needs of each group. This segment features the diversity council’s discussion with people of color beyond the African American community.

What makes you who you are? Do you play sports? Sing in a choir? Does the color of your skin make you feel the need to be aware of your surroundings? For people of color, this is often the case. Now, think about how they may feel if they have a BFRB. Although appearance may be valued differently within separate cultures, there always seems to be an emphasis on skin care, hair care and other beauty related issues.

What is your name and where are you from?

Ruby: My name is Ruby, and I am from Oakland, California.

Leah: I am Leah and I am from Sebastopol, California.

Alex: My name is Alex, and I am from Tacoma, Washington.

Can you tell me about your cultural background?

Ruby: My dad is third generation Japanese American and my mom is caucasian and half Middle Eastern, but we’re not sure what the other half is.

Leah: I’m adopted so I was born in China and adopted as a baby. As far as anything else goes, we don’t really talk to my dad’s side of the family, but my mother’s side is entirely Russian Jewish. I’m in that rare cross-section of Asian Jews.

Alex: I am Latinx.

What has your journey been like with your BFRB thus far?

Ruby: I didn’t know it was a thing until about two or three years ago. But I think that I’ve had dermatillomania my whole life.

Leah: I’ve had some form of a BFRB for as long as I can remember, and I didn’t even know it existed until about a few months ago. When I was little, I started with pulling my hair out in kindergarten and then from elementary through late middle school, I was a nail biter. That stopped, but somewhere in between I started cuticle-picking and skin-picking, and that progressed through high school and into college a little bit. The thing that has become most concerning recently, but is sort of something that has been happening on and off since I was young, is lip-biting or cheek-chewing. I did experiment with tongue-chewing but after I sliced off a centimeter of my tongue and wound up in the emergency clinic, I decided it wasn’t worth it.

Alex: It’s been a huge challenge. I’ve always been a picker for as long as I can remember. I was a clumsy child, always covered in scrapes and cuts, and I always got in trouble for picking at my scabs. Once I hit puberty, the disorder became even more visible. Acne started appearing on my face and I would pick and squeeze until a small blemish turned into a large scab. Makeup only seemed to make the texture more noticeable. My picking is part of my anxiety-triggered obsessive-compulsive disorder (OCD). High school was when my anxiety kicked up and it became a positive feedback loop. I would get anxious, so I would pick, which would make me anxious about my appearance, which would make me pick more and so on until my face was a patchwork of scabs. Even my eyebrows weren’t safe. I’m not a hair puller, but my eyebrows were something I meticulously plucked. If there was the tiniest hair out of place, I would pluck at it until it came out or until there was a bloody crater just below my eyebrow. I’ve learned to handle it better since high school, but I still have my moments where I realize I’m inches away from the mirror trying to pull out an eyebrow hair or remove a sebaceous filament and I have to force myself to put the tweezers down and walk away.

How has having a BFRB challenged you? What has been your biggest struggle?

Ruby: I think I would say I thought that no one else had the same thing. I felt like I was so weird and so different. I didn’t know that there was an actual explanation, so I thought that it was taboo and that I was a weird kid. I felt self-conscious about it. I have scars on my body and people would ask what they are, and I would say I got stung by a bee.

Leah: It’s a cyclical thing. For me, the risk of biting the inside of my mouth is that you can’t eat.

Alex: The most difficult thing is trying to tell people about it and answer their questions. I don’t know how to answer my mom when she asks why there are little scabs all over my face. I didn’t know how to talk to my partner about why I spent so much time in front of the mirror picking and squeezing at every little imperfection. It’s hard to open up and tell someone that because of your mental illness, you can’t stop picking at your face. So many well-meaning people have told me that picking only makes my acne worse, and I don’t know how to tell them that I can’t stop.

How have you embraced having a BFRB?

Ruby: I went to the conference last year and the community is nice. Everyone is accepting, so I think that’s cool. It has also helped me understand more about myself and what things I can do to prevent myself from going down a bad path. Because of this, I know that there’s a lot of underlying mental health issues that I must address and knowing that is the first step.

Leah: Finding this community and realizing that it exists is a highlight because while you are abstractly aware that other people do this, you come to a place like this and see that others are dealing with the same issues. All sorts of people, different ages; it’s not just me. You can find that in other communities, but people who are on the outside don’t truly get it.

Alex: As I sit here typing this, I have a spot on my chin that I’ve been picking at for weeks. It never quite heals over because I can’t stop picking. I’ll make a conscious effort not to pick it and then find myself in the car at a stoplight, fingers bloody and my chin a mess. But I’ve found comfort in my disorder. I’m a scientist, so I took a scientific approach to my issue. If my skin is clear, there’s nothing to pick, so what can I do to make my skin clear. I threw myself into skincare science, stocked up on serums and ampoules and snail creams and masks, just about anything I could get my hands on. This has helped a lot and has given me a positive outlet for my feelings. If I feel the need to pick, I start a skin care process. Maybe it’s as simple as washing my face and putting on moisturizer, or maybe I start a whole night of masks and serums. Nothing has helped me control my picking as much as taking care of my skin has.

Do you feel like your community is well represented within the BFRB community?

Ruby: People who attend the conference are probably upper-middle class which is predominantly white people. I think that mental illness is really a concern of many people who are upper-middle class, so that’s why they’re being represented more. Personally, I wasn’t surprised that most of the people at this conference are white, but I was a little sad that not a lot of people of color are represented.

Leah: With Jewish people, it’s harder to tell. One of the things we were talking about at the diversity table was that a lot of the people here are caucasian. I think because it’s such an upper-middle class and above thing to be able to have a psychological diagnosis. It’s much more common in that pool and it just happens to be more white people.

How could TLC better represent your community?

Ruby: Reaching out to lower income communities would be beneficial because this conference is not something that everyone can do. Bringing awareness to lower-income families is important so if their child has one, they know they’re not “insane.” Representation is an essential point as well.

Leah: I feel like what you’re already doing, making it so that people are aware, would help the Jewish community because so many of them are already involved in the academic area where it would be of interest to them. For Asian Americans, there are still enough values that don’t register as foreign. You can blend in a little more. I think it is very important to normalize it and make sure there is facial representation.

Alex: Making sure you’re hiring folks from all different backgrounds is the first step. A white, non-Hispanic researcher won’t have the background or tools to fully assess someone from a Latinx or Hispanic family. Even within that community, there’s a big difference between folks who grew up in another country versus folks who grew up in the U.S. Hiring people with those different backgrounds can make all the difference in reaching and supporting folks in the Latinx community. Partnering with folks from the Hispanic community would be a great idea. They are an incredible organization dedicated to helping Hispanic and Latinx people and institutions. They have several health initiatives, and I believe BFRBs and the mental health struggles associated with them would be a great addition to their education efforts.

How are hair, skin and appearance valued in your culture?

Ruby: I don’t know much about old Japanese culture but for me, my hair is just my hair. I was raised in a family that was like that, so I was fortunate.

Leah: As far as Jewish people go, I have a very different genetic makeup than your average Jewish person. I think there are a lot of stigmas surrounding certain traits in Ashkenazi Jewish communities. Larger noses, the “jewfro.” I didn’t really have to deal with that growing up because I have straight hair. For Asian Americans, all I knew for a very long time was based on the perception of other kids who didn’t look anything like me. As I got older and was exposed to media, I discovered the expectation of pale, perfect skin and long, straight hair. I don’t think hair pulling and skin picking is accepted by Asian beauty standards. You would probably get judged harshly if you were to do that in countries of origin.

Alex: In Mexico, your appearance is everything. What you wear, how you wear your hair, your makeup, it’s all part of what determines your overall value in society. My abuela never let her children see her without makeup until they were grown. My aunt had her eyeliner and eyebrows tattooed onto her face because she refused to let anyone see her without them. It’s not uncommon for Mexican women, especially of my mom’s generation, to wake up and put curlers in their hair while they get ready for work. Even folks who are poor, their appearance is the last thing they would sacrifice. If you look like you’re doing OK people will respect you.

Are there challenges that might be unique to you versus a caucasian person with a BFRB?

Ruby: I think it really depends on how the person was brought up. I was raised in a very modern family and a lot of caucasian people are raised in that environment. Maybe someone who was raised in a traditional Japanese home would have a very different experience. Again, socioeconomic class. My family didn’t have to worry about a lot of things in terms of money and health issues. But people in lower income families, they don’t really have the time or resources to investigate mental health issues.

Leah: Expectations of what you’re supposed to look like and how you’re supposed to behave are a little bit different. There’s more freedom when you’re caucasian. If you look a certain way or you are part of a different culture, you have people saying, “Why don’t you behave this way?” If you are not in that area of what’s considered, then you have to adjust first look normal and then you can deviate.

Alex: I think the biggest challenge is just the emotional repression that Mexican culture demands of its participants. You’re not supposed to have anxiety, depression or a BFRB. You’re just supposed to be a happy, normal person. I feel like white folks have a slightly healthier view of the whole thing and are willing to treat BFRBs seriously. I would probably just get laughed at if I tried to explain what one was to my family. Being believed and having someone encourage you to get help is often what people need to seek treatment, and you probably won’t find that in the Mexican community.

If we were to give you a megaphone, what is the one thing you would want to say to the BFRB community?

Ruby: You’re not alone. Even though not everyone is going to understand your struggles and not everyone is going to accept you, you are who you are and know that there are people in the world that love you. Stay strong.

Leah: Thank you and we exist!

The TLC Foundation for BFRBs strives to represent their community in the most accurate way possible and is constantly looking for ways to include all members equally. These interviews shed light on the importance of understanding body-focused repetitive behaviors and how to manage them within different cultures. TLC and the Young Adult Action Council thank those who were willing to share their stories.