About 10 years ago, my friend Harrison tossed a CD at me and said, “you have got to hear this album.” At the time, Harrison and I were deep into a genre of music called wizard rock, which was – there’s no un-geeky way to describe this – music based on the Harry Potter books. The album was from a new band called The Butterbeer Experience, and it was unlike anything I had encountered in the wizard rock world or beyond. The Butterbeer Experience was part rock music, part showtunes, and all heart.
I got to know Lena Gabrielle, the woman behind the music, when I played a featured role in a musical she had written. Beyond her considerable talent, she had a positive energy and a warm smile, and we became fast friends. Lena’s hair was cut short, but I didn’t really give it any thought. It wasn’t until years later that I learned she struggled with a mental health condition called trichotillomania.
Trichotillomania is a disorder in which the afflicted person pulls out the hair on their head, face, or body until noticeable hair loss develops. This used to be thought of as an anxiety disorder, but while many people who have it struggle with anxiety, trichotillomania is actually a “body-focused repetitive behavior,” like picking at your skin or biting your nails.
When I first got to know Lena, she reluctantly shared her story, but over the years, she’s become bolder. Now she owns her story, and she’s an enthusiastic mental health advocate. When I asked if I could write a blog article about her journey with trichotillomania, her transition from shame to empowerment, and how her participation in the Harry Potter fandom helped her, she excitedly agreed.
Where it all began
When Lena was 9 years old, she developed a case of headlice. Before she realized what was causing the itching, she reacted by pulling out her hair. When adults asked her about it, she denied it. “No, I’m twirling it,” she said. But before she knew it, she had a bald patch on the back of her head.
This coincided with a shift in Lena’s social status at school. In elementary school, she’d been admired for being smart and knowing all the answers; in middle school, she was bullied for the same thing. Her trichotillomania, which came in waves, didn’t help.
Her teachers tried to help, but the outcome was that they accidentally perpetuated the stigma. For example, one thing that helps Lena with her trichotillomania is wearing hats, but they weren’t allowed at school. Her vice principal made an exception for her, but she was constantly stopped in the halls by teachers who told her she was breaking the rules. Once in 6th grade, a science teacher tried to intervene, and said “Everyone has to give Lena a break, she said she has a condition where her hair is falling out,” which was inaccurate and perpetuated her peers’ perception of her “otherness”.
How Lena’s Trichotillomania Affects Her
Trichotillomania affects different people differently. “A lot of people have it when they’re stressed,” explained Lena. “Some people have it when they’re bored or can’t fall asleep. I used to have it really bad when I was driving. And I think for me, I know that my biggest chances of having it are when I’m coming down from some sort of big project. It’s like ‘oh my god, I’m calm now’ and then it happens.”
Lena’s trichotillomania comes in cycles. When it abates, she told me, “it’s usually at least a year” before it comes back. She says the things that help are support from friends, wearing hats, and ultimately shaving her head.
About a year ago, Lena sent me an excited text message telling me she had gone three years without hair pulling. Whether she meant it this way or not, I read it as, “I’ve figured this out, I’ve healed from it, I’m recovered now.” So I was surprised to see her posting photos of herself with her shaved head on Facebook. But the photos… they weren’t sheepish or shameful. They were beautiful and proud. Here’s one of my favorites:
Finding Harry Potter Fandom
According to Brene Brown’s research, shame is a universal emotion but some people manage it more successfully than others. A lot of factors contribute to being able to manage shame or, as Brown calls it, “shame resilience”. Some of these include community, creativity, and a willingness to own your story. For Lena, the place where these pieces came together was the Harry Potter fandom.
At conventions, Lena found that she made friends easily. She started writing songs about the books, and realized, “oh my gosh everybody wants to listen to my music and I’m small-scale famous”. In that supportive atmosphere, her support system flourished and her creativity thrived. In addition to the albums, she wrote three different musicals based on the Harry Potter stories. She also started to vlog, often about Harry Potter or music (or both!) and sometimes just about life.
The first time she talked publicly about mental health was at the end of 2007. Shortly after she had started The Butterbeer Experience, she was talking to one of her fandom friends about a trichotillomania relapse and they suggested that she talk about it on YouTube and ask for hats.
Before that, Lena explains, “My close friends and my family knew. So I posted this YouTube video and I got this huge outpouring… I got like 100 hats.” A few months after that was the first time she had the courage to shave her head.
“Having the Harry Potter fandom grounded me,” Lena explained. “I was never really grounded before because I didn’t have a solid friend group. It also allowed me to make goals for myself and be a self-starter and really creatively driven and always have this incredible support system.”
Becoming an Activist
Having found more comfort in herself, Lena has begun to turn her focus outward, on advocating for others. “Every time I post on Facebook about trichotillomania,” she said, “somebody else in my circle tells me that they have it and I didn’t know.”
Although Lena still struggles with trichotillomania, she was quick to acknowledge that there’s been a large shift in her perspective. “I’m not as outwardly ashamed of it now. Because I have some anxiety and other issues, I still tend to beat myself up when it gets bad. But I know what my triggers are and I know how to cope with it better.”
When symptoms flare up and she shaves her head, Lena says she now uses it as an opportunity to talk to others. In college, if someone asked her why she shaved her head, she would say “because I felt like it” or “because it was colored and got damaged”. Now she uses the question to increase awareness. “If I don’t have time to go into it, I’ll say, ‘I’m doing a project about mental health awareness’. Once the mom of a kid I work with asked me a few weeks later, ‘how’s your project going?’ and then I told her more about my story because she asked me again.
Where She is Today
Lena says she still struggles sometimes. She has a friend who also struggles with her mental health, so they text regularly to provide support for each other. Also, she says, “therapy is super important. When I have kids, I want them to go to therapy before anything even happens so that when they’re having a problem, they’ll have someone to talk to.”
She also leans on her creative outlets. “I’m working on a mental health musical,” she said. “It’s going to be a song cycle, like the Vagina Monologues, but with songs about different mental health issues.”
If you’re like me and you can’t wait to see that, here is a fabulous song Lena wrote about her trichotillomania and anxiety.
Currently, Lena works as a theatre music director and an early childhood educator in New York City. “Working with kids helps me a lot,” she says. And in terms of advocacy, her current goal is to talk about her mental health challenges even when they’re not visible. She wants to be a voice for this community even when her hair is long and she is, by all appearances, doing completely fine. “A significant portion of the world has mental health problems,” she said. “Think about all the people you pass on the street, and you never know what’s going on with them.”
The takeaway, she said, is twofold:
- Be kind, because you never know what’s going on with someone.
- If you’re struggling, you’re not alone.
Thanks to Kelly Tunney for allowing use of his beautiful photos of Lena!