Student embraces unique disorder on YouTube

Last spring, Kaija Reinelt was obsessed with other people's eyebrows. Before anyone could ask or even notice, she'd point out hers. She was constantly aware of them and what other people might be thinking. Kaija's full dark eyebrows stopped abruptly in the middle of the arch. She had pulled more than a third of her eyebrow hairs in 10 minutes, starting from the edge in toward the middle. The 20-year-old biology major has Trichotillomania, a body-focused repetitive disorder that causes her to pull the hair out of her body. Over the summer, Reinelt went through a period of self-discovery that culminated in a YouTube video she posted to tell the world about her story - and help others like her - who are suffering in silence. SUFFERING IN SILENCE Trichotillomania (Trich) affects approximately 2 to 4 percent of the population and is found in all ages, races, and economic statuses. Of the adults with Trichotillomania, between 80 and 90 percent are women, according to the Trichotillomania Learning Center. People with Trich pull from all areas of their bodies. Reinelt began pulling the hairs from her eyebrows and arms when she was 11 or 12. It wasn't until she reached high school that she discovered a diagnosis for her condition. After her English class read "One Flew Over the Cuckoo's Nest," Reinelt's teacher distributed a letter to the students. A former student had written about her experience with Trich in hopes that students would understand that mental illness has a much broader spectrum than the images of people chained to the bed that were presented in the literature. "So I'm reading that ... and I'm just like, 'Oh my god, this is me,'" Reinelt said. When Reinelt got home from school that day, she researched the condition. When she read that it was a disorder with no cure, she used that as an excuse to ignore her condition, allowing it to fester in silence. It wasn't until last spring, when half her eyebrow was gone, that she decided to look into it again. She found a list of resources on the Trichotillomania Learning Center website and got in contact with Seattle-based behavioral psychologist David Kosins, who said that Trich may also have a genetic component. Kosins works for the UW, advising students in the psychology and behavioral science departments. SEEKING TREATMENT Reinelt usually pulled when she was alone, after coming home from a long day of activity and slipping on a pair of sweatpants. The urge to pull was strong during those first moments of the day when she was able to relax. She watched TV or read, not realizing she was doing it, until the hairs were already gone. The act of pulling is often subconscious, Kosins said. It is a way to cope and soothe. Reinelt doesn't pull her hair out all the time. It is only during periods of high stress. She never felt comfortable seeking help for the anxiety that triggered her Trich, because stress is something everyone deals with, she said. But last spring, when things got bad, she decided to seek help. In treatment, Kosins asks his patients to create a log of all of the times they pull. "[The log] serves as an awareness training to bring pulling back into consciousness," Kosins said. Now that Reinelt is consciously aware of her pulling, she can recognize the impulse. The urge to pull is a blessing in disguise, a warning sign. She is able to identify the cycle of triggers. This empowered her to fight those urges mentally and physically. Often, Kosins said, people will pull when their hands are unoccupied and near their face. Reinelt uses kush balls and other toys to keep her hands busy. Yoga also helps Reinelt utilize mindfulness meditation practices. "It's just like being really aware [of] your mind state and instead of automatically going up to pull out my hair I go, 'Hmm, I have this urge,' and just kind of sitting with that and being really aware," she said. Meghann Gerber, a clinical psychologist at the UW's Mental Health Clinic at Hall Health, leads a mindfulness meditation group therapy session at the clinic. Mindfulness has increased in popularity because it is an effective tool to reduce stress. "[Mindfullness is] a tool for having more control over how our minds work," Gerber said. Aside from behavioral therapy, Kosins recommends seeking out support groups. "Attending a support group is another extremely helpful part of the healing because [learning about Trich and getting over the shame] can go a long way to increasing self-esteem and getting help," he said. Before this summer, Reinelt felt isolated. After attending Kosins' support groups and a summer retreat for people with Trich, she found a community of people who not only had the same symptoms, but understood her. "I think one of the things that is really sad about the whole disorder is [that it is] something that makes you feel so alone," she said. "I thought I was crazy." BECOMING A VIRAL ADVOCATE She decided to make the video while she was at the Trich retreat. Of the approximately 100 people there, Reinelt's case was one of the mildest. "I was okay with my own situation, but I realized I was not okay with the big picture, with how people have to deal with this disorder and really any disorder or difference," she said. So Reinelt wrote a list of things she wanted to say and turned the camera on. She sat in her bedroom filming, chewing gum, and explaining her experience with Trich. She smiled as she told about the love she found in the Trich community. Her voice broke and she paused, tears forming, as she told people that they are not alone and they are not crazy, like she once thought she was. "It [brought] up those feelings that I've had in the past, feeling so incredibly alone and then transferring that and knowing that so many other people feel that way, and wanting them to know that that's not really how it is," she said. For Reinelt, the video held a double meaning - it was a message to others that they were not alone, but also a message to herself. "I think that's just a very emotional human thing, a combination of my own past and feelings and knowing that other people are in the same position," she said. "And not being okay with that." Before she made the YouTube video, only a handful of people in Reinelt's life knew she had Trich. So she sent it to different groups of friends on her Facebook first. Then she sent it out to the world. So far, her video has nearly 1,400 views. Reinelt did not expect the outpouring of love and support that the video has received. She hasn't had the time to respond to everyone from whom she's received messages about their own experiences with Trich or other struggles they've had. "I was shocked," she said. "I didn't get a single negative response." Reinelt used the video for a presentation in her class, "Race, Advertising, and Capitalism in Americana." While the class watched the first half of her video, she sat in the front, face to the screen, curious but scared of what her 40 peers might be thinking about her as they watched her tell her story. "[But] when I found the strength to look out, it was horrifying and beautiful," she said. "Every person had this 'holy s---' look on their face." Reinelt has been told that her video is hard to watch. When people begin viewing her video, their first reaction is usually to feel sympathy for Reinelt, but eventually, she said, they begin to think about their own struggles. "[After my presentation], I went and just sat by Drumheller Fountain and watched people," she said. "I saw that every person was carrying their own pain and I soaked in that feeling." SOCIAL IMPACT OF TRICH For a lot of people with Trich, shame is one of the most difficult aspects of the disorder. This leads them to hide their missing patches of hair with makeup or wigs or fabricated stories. Gerber predicts that these disorders are more common that we believe. "On a campus with tens of thousands of students, we have hundreds of people walking around thinking that they are the only ones, and they're all suffering from the same thing, just in isolation," she said. In order to mend this atmosphere of shame and secrets, Gerber said, conversations about mental illness need to be more open to the public in order to address the stigma that it currently carries. MOVING FORWARD Reinelt doesn't know what the future holds for her and her role as an advocate for people with Trich. She has not pulled since last spring but still fights the urge. The impulse ebbs and flows along with the inevitable highs and lows of life. She says it's something that will never go away. Reinelt plans to make a second video, which will explain the impact of telling her story. "People are suffering in this world," Reinelt said. "[I want to] give people tools to adjust their own problems and continue on that path of trying to help people be happy. That's ... my goal in life." Reach Features Editor Sarah Radmer at features@dailyuw.com. Twitter: @sarahradmer

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