Tova
Hi, I am calling from Chapel Hill, North Carolina, and I would love to see a show dedicated to body-focused repetitive behaviors such as nail biting, skin picking and hair pulling. I have had trichotillomania for 25 years and have worn a hat or bandana daily for 25 years. I have a lot of shame and embarrassment about it. I bite my nails too, but it is more socially acceptable, it seems, to bite your nails than to pull your hair.
Anita Rao
A topic riddled with shame and misconceptions? Yeah, we'll take that on. This is Embodied. I'm Anita Rao. I made it through middle and high school without ever getting acne. A pimple popped up here in there, but for the most part, I really lucked out on the skin front — until a complicated bout of eczema hit me in my 20s. What I didn't tell you in our episode about skincare? That eczema also led to a years-long struggle with skin picking.
There was a particular patch of skin around my right ankle bone where I'd get repeated eczema outbreaks. And while itchiness made me start scratching, I continued out of boredom, or because the bumps on the thinner skin were fun to pick at. Sometimes I'd even do it without realizing it — in my sleep and wake up in the morning with a bloody ankle. It looked gross — to the point that I was embarrassed during sandal season. For a while, every attempt I made to stop scratching only seemed to make things worse. Eventually, I started bandaging the area to stop myself from getting to it and found an eczema cream that actually worked. What remains today is a scar and empathy for my past struggling self.
Body-focused repetitive behaviors — or BFRBs — come in many forms, including skin picking and hair pulling, which is also known as trichotillomania. Trichotillomania — or trich — affects between one and 4% of people, which is more than some other commonly-known mental health disorders, like OCD and Tourette Syndrome. But if you've never heard of it, you're not alone.
Haruka Aoki
It was actually in a group therapy class where I learned the term trichotillomania. And that was when I was 30 years old.
Anita Rao
That's Haruka Aoki. They're a queer Japanese artist, poet and author/illustrator of children's books based in Queens. She first started pulling her hair as a young kid — decades before she ever learned the technical term for it.
Haruka Aoki
When I pulled, I would feel a sense of calm. And so, it wasn't always a sad, or anger-induced behavior. For me, I could zone out a little bit and actually use that as an escape. And so initially, I was like: Wow, this feels really good. But later, because trich is quite a physical condition, I would see all of these hairs that I pulled out from my scalp around me. And then, that led to the shame and the embarrassment.
Anita Rao
You mentioned that — your first experience doing it — you really felt this sense of calm in that moment. And as you've reflected as an adult, it really was a coping mechanism for you to, kind of, work through stress at that time. Tell me about what was going on in your childhood that you've thought about, maybe, was a trigger for the beginning of your hair pulling.
Haruka Aoki
I had just moved from Hong Kong when I was seven years old. And I was so shocked to see the green lawns in the suburbs of New York, and I had never seen a squirrel before. Yeah, I was like, wow, what is this? What is this place? It's so different. And not only were my surroundings different, I had to make new friends. I had to continue my studies in both Japanese and English. And that was really, really hard for me. I think often we don't think about the amount of pressure that kids can carry. And now, looking back to when I was a child, I'm like: Wow, I can't believe I was able to go to two schools at once, do the homework for each in different languages. And yeah, as a seven year old, that's — I think — a lot to hold.
Anita Rao
You created this really beautiful personal narrative comic about your experience with trich that was featured in The Washington Post. And one of the moments you describe is when a friend came over and pointed out all the hair that was on the floor. Take me into that moment, and what it brought up for you.
Haruka Aoki
Yes, it was my good friend who came over, and, of course, I was so happy to see him. But I did not have time that day to clean up my hair, which is usually what I do. I would pick up the hairs that were across the floor, put it in the trash as if nothing happened. And when he walked in, he immediately noticed all the hair. And I actually couldn't tell him — even though he was such a good friend — I couldn't tell him the truth. So I'd say, "Oh, well, I actually love brushing my hair. It's — it's a passion of mine." And so, at the time, I had long hair. And so, it was very, very noticeable. And so, I think that moment was a very memorable one for me. And for decades, I hid my condition, because I really didn't know what was happening to me — why I did this.
Anita Rao
What kind of conversations did you have with family members or adults about your hair pulling? Did anyone bring it up to you once they noticed it?
Haruka Aoki
You know, I was such an expert at hiding my condition, that it was only recently, when The Washington Post comic came out, that I let my parents know. So it really was not something that I talked about openly. And I think part of that is because I didn't know what it was. And I didn't know that term: trichotillomania.
Anita Rao
Wow, that is really profound that it has been, you know, decades that you have been moving through this and haven't even shared it with your own family. I'm curious about what that experience was like — to be open with them.
Haruka Aoki
It's interesting, I feel like with my artwork, sometimes I am able to be very, very vulnerable in a way that's, actually, quite difficult with close friends or even family members. And so, with this comic, I was able to really express what had been bottled up inside for so long and to share this journey that I've had with trich. And then through creating my artwork, I am able to — in a way — time travel back to my younger self and heal with them together. Some of the things that my younger self was not able to receive — like a certain kind of love or attention — I can give this to them now, as an adult.
Naomi Prioleau
I'm Naomi, and I'm from Durham. I have been dealing with trichotillomania since I was about 15 years old. I'm 33 now. And it started just absentmindedly. I didn't realize that it was connected to stress or anxiety until I was much older. When I moved to North Carolina, I had gone to a hairstylist who — I guess she over processed something in my hair, and my edges were completely gone, like, the temple of my hair was completely gone. But when I would try to grow them back, I would pluck at them. I realized that it was a big issue when I was in a hotel room. I was really upset because I was mourning the loss of a friend, and I picked every single one of my edges out to where I was bald again.
Tova
I started pulling the hair from my scalp during summer camp in middle school. I'm 37 now, and I still pull from my scalp. It's so hard to describe the sensation of why pulling out my hair feels good, and even saying it out loud just feels so odd. As an adult, my hair pulling is not something I talk openly about — except with my husband — and I never pull in public.
Sarah
For me, the urge to pull my hair comes out the most strongly when I'm feeling imbalanced. And that mostly comes from something going on with friends, or at work or anything that's thrown me off. The urge to pull is, like, comforting in that way because it makes me feel settled and calm.
Anita Rao
Those are Embodied listeners Naomi, Tova and Sarah. There is no one reason why folks pull, which means that for psychologist, Suzanne Mouton-Odom, helping clients with trich comes down to understanding how these behaviors function for that specific individual.
Dr. Suzanne Mouton-Odum
There is a reason why we are engaging in them — even if it looks to someone else like it would hurt, or be uncomfortable, or it wouldn't be a functional behavior. And that's why we, kind of, need to dig deep. So we look at antecedents: what things happen prior to pulling or picking that makes pulling or picking more likely to happen. What happens during, and then, following pulling or picking, sort of, what occurs. Emotions, sensations, experiences, that make pulling more likely to happen again. And we want to intervene at any of those periods, but mainly we want to intervene early on, so ultimately, we can, hopefully, head off that urge before it begins.
Anita Rao
Dr. Suzanne Mouton-Odom serves as the vice president of the TLC Foundation for Body-Focused Repetitive Behaviors. It's a Houston-based hub for research, resources and information about trich and other BFRBs. There are lots of misconceptions out there about how trich relates to other mental health conditions. Addressing those misconceptions requires some important context. First, that trichotillomania is not the same as OCD. The behaviors associated with trich are repetitive largely because they feel good, or because they're helpful in calming the body down. Another important thing to note: this disorder isn't new. In fact, it's been around for thousands of years.
Dr. Suzanne Mouton-Odum
There are references to hair pulling in the Bible — in the book of Ezra — and even in Homer's "The Iliad." In ancient Egypt, we see in, you know, digs, there are remnants of tweezers and implements to pull hair. So throughout history, we have references to pulling. And then there's, of course, the reference of, "I'm so stressed, I could just pull my hair out." Which — which I think a lot of people resonate with, as being associated with feeling overwhelmed, stressed, or in a difficult situation.
Anita Rao
What's interesting about that phrase is, it really links pulling your hair out to anxiety. But there are other potential triggers for hair pulling, it's not just stress and anxiety that causes it. So talk to us about some of the other triggers.
Dr. Suzanne Mouton-Odum
Sure well, I do think it's true that most people who pull hair and pick skin do those behaviors — at least some of the time — when they're feeling tension or stressed. But as soon as they say that, someone will say, "And I also pull or pick at other times, too." And those might be downtime, watching television, while thinking, sitting at work or on the computer, being in front of the mirror, getting triggered by visual cues, seeing a hair or a spot of skin that looks different or unusual. So it can be triggered by what we call internal triggers, or cues, which would be thoughts, or feelings or sensations. Or external triggers, or cues, which would be places, activities. And so, there's oftentimes a feeling of gratification or relief following a BFRB.
Anita Rao
So in the moment, I mean, it feels pleasurable, it feels good, but afterward, there are consequences for folks. We heard Haruka talk about that experience of having a friend comment on all the hair that was on the floor. I'd love to hear about some of the other consequences experienced by the folks that you work with that go beyond, just, what their personal experience — or personal appearance is.
Dr. Suzanne Mouton-Odum
Most of all, shame and secrecy. People even get into self hatred or disgust — at the very least, confusion and not understanding why one is engaging in these behaviors. People feel very isolated and alone. But beyond, sort of, the psychological and emotional impact, we have psychosocial. You know, people reacting differently to a person who has scars on their skin, or is wearing a wig or has a bald spot. We see, you know, people not pursuing a career path that they would have otherwise pursued, or higher education because of having to go to college and have a roommate, or go through some of the social implications of that.
It is expensive to pay for wigs, and scar ointments and laser treatments and, sometimes, even surgeries. There are medical implications for many people. About 13% of people who pull their hair out ingest the hair, which can be problematic if they're ingesting long hairs. Those long hairs can get tangled with food and get stuck in the stomach and not pass through the gut, which can cause a blockage where it has to be surgically removed as a result. And so, these are not behaviors that are to be taken lightly.
Anita Rao
The average onset of trich is between nine and 13 years old. In menstruating kids, BFRBs often start the year before they get their period. At this pre-pubescent time, trich is equally prevalent in all genders. But later on, it's seen more commonly in folks assigned female at birth. The exact reason for that is unknown and the subject of ongoing studies. But no matter how old you are when you first experience trich, it's likely that the urges will be with you in some form for the rest of your life. For Haruka, they aren't as intense as they were when she was a kid, but they do still come up from time to time.
Haruka Aoki
I definitely do still have the urge to pull. And when I do now, I try to be aware of them. Because, hours can go by without me noticing. And for me, personally, I would like to stop that urge — or try. And so, some of the things that I've been doing is to spread my fingers out wide, so there's that immediate aha moment in my brain saying: "Oh, look what I'm doing." And also, sometimes I wear gloves, especially while I'm watching movies. And another thing I do is, I actually talk to myself in a very kind way, as if a friend were talking to me. I say: "Oh, I see you're pulling. Hmm, that's interesting. Do you remember what happens if you continue doing this for longer? Perhaps it's the time for a tea break? Or, hmm, has it been three hours since you last stood up?" Just trying to coax myself out of that zone that sometimes I get stuck in.
Anita Rao
I love that. And that really brings me to this, I guess, thought about acceptance. Some of the work is helping people to accept that this impulse is going to continue. Suzanne talk to me about the movement toward acceptance and how you try to help folks on that journey — if they're coming from a place of really feeling frustrated that they can't stop the behavior.
Dr. Suzanne Mouton-Odum
Sure, and I think it's such a beautiful reframe of this. And the truth is, we see people stop engaging in their BFRB all the time. But you're right, those urges, impulses, sensations, may still be there forever. And maybe they die down, and they get quiet over the years. But I think because these are hardwired, built-in potentials, you know, we all need to accept that we have predispositions and potentials built in with our genetics. And we can't change that, but we learn to manage it. And we learn to live our lives to the fullest. Even though we have these urges and experiences, we don't necessarily have to act on them. And so, learning to tolerate experiencing an urge and not acting on it is a huge part of what we do in therapy — if a person's willing to do that.
Anita Rao
Haruka mentioned earlier, not really sharing this with her parents until very recently. I'm curious if you work with parents who are bringing in their kids because they're concerned about the behavior. And what that looks like — if maybe a parent is concerned, but the kid isn't? Is it always necessary to stop this behavior?
Dr. Suzanne Mouton-Odum
Sure, we work with parents all the time. And it is as important, if not more important, to work with parents to change how they are responding. And the most important thing for parents to realize and understand is how not to instill or reinforce shame within their child. And to help them see that their child is a wonderful, beautiful soul just the way they are — regardless of hair or skin. What happens, oftentimes, is parents get very anxious or upset about the behavior and get very focused on it, which is our job — to help our children. But what it looks like to a child is: "I am only good if I have hair. Or, I am only okay if my wounds are healed, and my skin is healed." And it can really lead to and reinforce that shame that is already there.
Anita Rao
Haruka, you write and illustrate a lot of stories for kids about identity and self expression. I know you haven't created something explicitly about trich for kids, but I'm curious about, kind of, how you think about opening those spaces for kids to reflect on their internal emotional lives, and why that's a fruitful space for you.
Haruka Aoki
As a kid, I did feel very lonely and different. I felt like I had to conform, wear certain things, look a certain way. And this is why I wrote and illustrated with my wonderful friend, John Olson, a children's book called "Fitting In." And it's about a square that is born into a world of circles. And I think we really wanted to celebrate what makes each person unique and wonderful. To appreciate that we truly are all special and beautiful as we are.
Anita Rao
I highly recommend checking out Haruka's children's book, and all of her illustrations in general. The very last illustration in her comic about trich has a line and accompanying drawing that really got me. It's an image of her older self hugging her younger self. And the text reads: "By being kind to myself, I know that my kid self has a chance to heal too."
Tova
For many years, the message I was given — and what I internalized — was that if I just tried harder, or more intentionally, or had stronger willpower, I could be completely pull free and treated. But with 25 years behind me, including time spent in psychotherapy, and on antidepressants as a teenager, I don't find this to be a helpful framework for me. For me, it's less about overcoming it, and more about understanding it. I believe — even if my hair grows back 100% — the urge will still be with me for the rest of my life.
Sarah
The relationship that's really changed for me over time is finding the internet and finding communities on the internet where I learned that I'm not alone — that a lot of people go through this. That's really what's changed my relationship with my hair and given me, like, more empowerment around it. Instead of feeling, like, how I maybe felt before I knew what it was called.
Erin
I think I got a workbook online about hair pulling. And then, it was so clinical that I never got through it on my own. And ultimately, I had to, like, consciously tell myself: "Stop. You don't want to do this." Until it became something that I noticed myself doing and could physically restrain myself from doing.
Jillian
I realized a while back that I had actually been hiding behind my lack of hair. And I just started to wonder what I'd look like, how I'd feel, if I just let it do its thing. And if I just stopped identifying with this disorder so much and stopped thinking about it so much. Would I feel soft or romantic? Would I feel more approachable? Would I feel more like a blank canvas? And at the end of the day, trichotillomania is just one thing that informs a tiny part of who I am.
Anita Rao
Those were Embodied listeners Tova, Sarah, Erin and Jillian. The results of trichotillomania, like having no eyebrows, or lashes, or bald spots on your scalp, can be highly visible. But many folks with trich become experts at hiding. Wearing dark eyeliner, parting your hair a certain way or frequently wearing hats, headbands and scarves. One space in which hiding your hair is almost impossible: the salon.
Dorin Azérad
Most trichsters — most people with hair loss — we avoid hair salons like the plague.
Anita Rao
That's Dorin Azérad, a self described trichster. She's had trichotillomania since she was four years old. She started by pulling mostly eyelashes and eyebrows. But by the time that she was seven, she was also pulling hair from her head. Around middle school, she started wearing headbands every single day to cover up bald spots. And throughout all of this, she went to the hair salon as infrequently as possible. Like once every five years. So what she ended up doing as her career was a bit surprising — even to her.
Dorin Azérad
I graduated from college, and I was just at, sort of, a transition point. At that point, I'd had trichotillomania for many, many, many years. And I was just, kind of, getting to a place where I was realizing that, if I didn't get to a place with acceptance with my hair loss with my trichotillomania, I would look back on my life, decades later, and wonder what if — wonder what've happened if I hadn't felt like my trichotillomania had ruled my life.
I think for many of us with trichotillomania, we feel like it's our deepest, darkest secret, and I know that was the case for me. It felt like every decision growing up was somehow informed and, you know, due to my trichotillomania. So I just wanted to get to a place where I wasn't in that place anymore. And so yeah, I was starting my museum job, and I quickly realized, you know what, I don't think this is what's meant for me. I think that what I want to do is turn something that has been this dark thing for me, and turn it into a light for my life — and also helping others as well.
Anita Rao
Turning that darkness into light first meant cosmetology school. And then, becoming a hairstylist working specifically with folks with hair loss. Dorin tries to provide spaces for clients like the ones she wished she had growing up.
Dorin Azérad
Private rooms are key to people with trichotillomania — to people with hair loss in general. You know, I think for a lot of us, a lot of the experiences we've had surrounding our hair have been really negative. And so, my goal when someone is sitting in my chair is for people to start building positive experiences surrounding their hair. You know, I'm happy to talk about trichotillomania, I'm happy to talk about, you know, the journey that we've been on. But especially for my clients who I see pretty frequently, I don't want this to be a space where we're, like, lamenting or in despair about our hair 24/7. Let this be a place where we can just style your hair, make it beautiful, and we can just talk about your life. Just, kind of creating more positive experiences surrounding their hair is really important to me.
Anita Rao
I know that one of the things we've been talking about is how each person's experience of trich is different. How they pull, where they pull, and how they feel about wearing hair, or wearing toppers, etc. At one point you shaved your head entirely, which is something that some folks with trich do to, maybe, stop the urge or to change their response to their — the hair on their head. Talk to me about your experience shaving your head and how it affected your trich.
Dorin Azérad
I think it was, like, in 2017 around is when I shaved my head. And it was something that — when I was younger, I don't think I ever would have imagined shaving my head. But at the place when I decided to shave my head, I felt like my trichotillomania had really controlled so much of my relationship to my hair for so many years, that I felt that if I shaved my head, that now the control would be back in my own hands. And so, I shaved it. I was as happy as could be, I probably kept it shaved for about a year. And I will say for me, my trigger is shorter hairs. And so, shaving it caused me to actually pull more than I had anticipated.
Anita Rao
You mentioned earlier that hair is really a symbol of so much. Now that you're at this point where you have accepted your trich but you are often wearing hair of some sort, I'm curious about the symbolic associations that you have with hair.
Dorin Azérad
My relationship to my hair and my alternative hair has definitely morphed over the years. When I first started wearing alternative hair — like I said I was 16 — and it was because I had to wear headbands every single day. I was really limited in how I could present myself. My trichotillomania has caused a significant amount of traction alopecia all over my head. And for those who don't know, traction alopecia is a form of scarring alopecia. I think it's most commonly discussed when it — when it comes to, like, really tight braids, or ponytails or hairstyles that put a lot of pressure on the hair follicle.
In my case, my trichotillomania has caused me to have, essentially, huge portions of my head that don't grow any hair back. And so, you know, let's say, one day I stopped pulling and my hair grew back, there still would be large portions of it that aren't growing back. It's not even so much that I worry about how I'm presenting myself to others, but I wouldn't want to have other people feel uncomfortable — if that makes sense. I don't recommend this for everybody. I have clients who have bald spots and are totally fine, and walk around, and live very happy lives and all is well. But you know, when it comes to — especially like, where my bald patches are — I wonder, like, would I be able to get a job if I didn't wear alternative hair?
The ability to wear hair, for me, and present myself in this way has just allowed that ease in my day to day life. You know with friends, with family, I will take my hair off and be very happy. If someone were to come up to me, I wouldn't be afraid to take my hair off. But it's just a part of my journey with my trichotillomania.
Anita Rao
Wherever you are on your journey with trichotillomania — or any kind of hair loss — finding a stylist who can ride that journey with you can help ease some of the tension and discomfort. The TLC Foundation that Suzanne works for has a self-care provider directory through which you can search for folks who have experience serving the BFRB community and provide a range of services, from haor styling to eyelash extensions. You can find a link to that directory in our show notes.
If there isn't a particular specialist in your area, Dorin has one major tip: communication in advance. Call or email the salon ahead of time and let your stylist know that you have trich or just that you have some form of hair loss. That way you don't have to bring it up in the chair if you don't want to.
Dorin Azérad
I currently work at a salon that specializes for, you know, people with all different forms of hair loss. And on my first day of shadowing, there was a client who was getting her first hairpiece ever. And her form of hair loss and my form of hair loss are different. But you know, so many of her questions and concerns and, just, thoughts were the exact same things that I was worried about when I first started my journey with alternative hair — and when I first started coming to a salon that specialized for people with hair loss. So we are different, but we're similar in a lot more ways than I think we realize.
Anita Rao
That last line pretty much sums up my big takeaway from the show. It wasn't until I was working through writing the intro essay that I even connected my own experience to a BFRB. The same was true for a lot of folks on the Embodied team. And the compassion part? That is a lesson I can always stand to relearn. My partner has also been on a long journey with his BFRB, and I'm glad we have some new language to talk about it. If listening to this episode has helped you recognize or give words to some of your own behaviors, Haruka has this to say directly to you.
Haruka Aoki
If I could, I would reach out and give them a big hug. It can be so, so lonely, and I want to say you're not alone. You can just imagine me in the house next door, sometimes pulling my hair and, you know, having a hard time with that behavior. There are way more people than you think who are struggling through this, and it's not something to be ashamed about. We can all manage it together.
Anita Rao
Embodied is a production of North Carolina Public Radio WUNC, a listener supported station. If you want to lend your support to this podcast and WUNC's other shows on demand, consider a contribution at wunc.org now. This episode was produced by Audrey Smith and edited by Amanda Magnus. Kaia Findlay also produces for our show. Madison Speyer is our intern and Jenny Lawson is our sound engineer. Quilla wrote our theme music. Special thanks also to Chapel Hill-based listener, Tova, who pitched us this show.
If you want to pitch a show idea that you have, you can email us: embodied@wunc.org. Or, like Tova did, call and leave us a message in our virtual mailbox: SpeakPipe. You can find that link on the right hand sidebar of our website. If you enjoyed this show, share it with one friend who you think would love to hear it, or post about it on social media. It really helps new people find our show, and it really means a lot. Until next time, I'm Anita Rao, taking on the taboo with you.