One brave girl’s battle with trichotillomania — a disorder we don’t talk about enough
In many ways, Mackensie Freeman is very much your “typical” teenager.
The 16-year-old is her high school’s mascot (a lion) and writes for the school paper. She recently got her driver’s license and is still adjusting to driving alone. On the weekends, Mackensie goes to Flywheel with her dad. She loves to shop (Forever 21, Macy’s, Topshop, and Nordstrom are her favorite stores), and in her free time, she likes to art journal and read.
But unlike many of her peers, Mackensie has trichotillomania: a body focused repetitive behavior (BFRB) in which a person feels a compulsive urge to pull out his or her hair. Symptoms usually first occur between the ages of 11 and 13, and it’s equally common for boys and girls. However, according to the TLC Foundation for BFRBs, 80-90% of reported adulthood cases come from women.
It’s a disorder that we don’t often talk about, especially given how common it is (an estimated 2-4% of the population has it) — and Mackensie is on a mission to change that.
“Trichotillomania is very hard to stop, especially since one is not always aware when he or she is pulling,” Mackensie told Hello Giggles. “[It] is not seen as an addiction; it is an actual disorder.”
For the past few months, Mackensie has been featured in multiple publications and websites in the hopes of raising trichotillomania awareness by sharing her story. Just last week, she was the debut subject of Buzzfeed’s latest series, called “16,” prior to that, she was featured on MTV, J-14, Cosmopolitan, and Gurl.com. She is outspoken and wise beyond her years — and hearing her speak about trichotillomania only further proves it.
“I have a theory,” Mackensie told Buzzfeed. “Once you’ve had trich for a long time, you get so far and deep into it that it’s, like, taken over you — you feel like there’s no help and that nothing you can do will help it. And you get brainwashed, in a way, into thinking that you like having it and that you don’t want to stop. So I’m kind of in that hole right now.”
Mackensie goes to therapy and has tried a few medications, but what has helped her the most is sharing her story with the trich community, Skyping with her “trich friends,” and obsessing over her favorite band, One Direction. She even said that remembering 1D while pulling can help her to stop for a few minutes.
“I’ve been to their Take Me Home tour and had front row seats at their Where We Are tour,” Mackensie told Hello Giggles. “I made eye contact with them!”
“My room is covered in their posters. I even wrote an essay about my love for them in English and I got a 100 on it,” she continued. “1D has helped me in so many ways and I am so thankful for them; I like to think they helped save my life.”
Basically, Mackensie is an all-around awesome, smart, and super cool girl, and we couldn’t be happier that she’s been so successful in raising trichotillomania awareness. Below, we asked her a few more questions about her experience.
HG: When did you first find out you had trichotillomania? Were the symptoms gradual or sudden for you?
MF: One day during fifth grade, I started pulling out my eyebrows because I was self conscious and thought they were too bushy. I got obsessed with the thought that the less hair, the better — so I just kept pulling. Maybe a week after I started pulling, my parents noticed my eyebrows were becoming sparse. They asked if I had been plucking them out and, embarrassed, I said no — I had been pulling them out. My parents googled hair pulling and my dad told me that I wasn’t alone and that it was called trichotillomania.
My parents have been so supportive about my trich and I am so grateful for that. So many people who suffer, their parents just don’t understand, and I can’t even imagine what that would be like. My parents have given up so much for me; to take me to the [TLC] conference, therapy, medicine. They are one of the reasons I am where I am today.
Then, in sixth grade, I stopped pulling from my eyebrows and started pulling from my head. It got so bad my dad shaved my head and I had to wear a wig. In seventh grade, while wearing my wig, I started pulling my eyebrows. In eighth grade, I took off my wig, and found out about eyebrow makeup. And in the middle of ninth grade, I had to get a hair piece (not a full wig). I don’t really wear it anymore, but I still use eyebrow makeup every day.
HG: What inspired you to start reaching out to so many people about your experience? Have people been supportive overall? (We think you’re super inspiring here at HG!)
MF: Aw, thank you! People who suffer from trich are often super embarrassed and ashamed of their condition and don’t tell anyone. Everyone at my school already knows (my guidance counselor told them, with my permission, when I came back to school after winter break bald — my dad had shaved my head), so I wasn’t really worried about them being freaked out or anything. I mean, of course people are going to have their reactions, but then I remember all of the support I have from my family, friends, and TLC, and that overrides everything.
I started reaching out when TLC asked me to be in an MTV article, and kept reaching out to other places. I’ve been so inspired by everyone at the TLC conferences and I wanted to be one to inspire people. Since there is such small awareness about trich, why not start on my own? And everyone has been so supportive of the articles! Everyone has shared them and it’s amazing. At the TLC conference, I even gave my first autograph and signed a copy of the J-14 I was in! It’s just great to be a voice for those who are too scared to speak out.
HG: I would love to hear more about TLC! It sounds like such a wonderful organization and it’s super rad that you got to speak at this year’s conference. How did that come together?
MF: TLC (Trichotillomania Learning Center) is awesome! I’m really close with one of the staff members for TLC who plans the whole conference, so I asked her if I could speak, and next thing you know, she assigned me the opening welcome! It was so surreal; for so many years I’ve always been in awe and inspired by those who spoke at the conference, and now I got to be one! I’m really honored to have been given that opportunity. I spent a few months writing my speech and TLC took a look at it and approved it. I wrote from the heart so it flowed out pretty well. This past April was my fifth consecutive conference, and it was also the biggest conference; there were over 500 attendees including kids, teens, adults, parents, and treatment professionals. I also presented for teens with a friend of mine. One of my favorite things about TLC is the sense of community — everyone is so nice. You can go to your first conference and instantly connect with other people. It’s truly amazing.
This past November, I also presented for teens at a TLC workshop in Atlanta. A TLC workshop is basically a one-day conference, and there are sessions for teens and adults to attend. It is a great way for people who have never been to a conference or TLC event to get a feel for what happens at the conference and what TLC is all about.
HG: Why do you think trich is so under-studied? From what I’ve read, it’s surprisingly common — do you think it’s mostly to do with lack of awareness? Or is it something more?
MF: So many people don’t even realize trich is an actual disorder, and they think they’re crazy and are alone. They don’t get the proper treatment and support they need because they don’t realize there is help out there. It’s actually pretty common — it affects around 2-4% of the population. A lot of people also live in shame about their trich and are afraid to open up about it. You can’t blame them, though. They’re probably scared of people’s reactions. After all, it’s not really seen as “normal,” though so many people have it.
HG: Do you have any message for those struggling with trich who aren’t sure how to get help?
MF: First of all, please know that you’re not alone! There are so many people out there who feel the exact same way you do. I would definitely recommend checking out the TLC Foundation for BFRBs because they have great resources and can help you find treatment. I am also a member of the TLC Millennial Task Force, and one of our projects has been an advice column, trichs-n-picks.tumblr.com. That is a great resource if you’re looking for answers. All of the questions are answered by young adults who suffer from BFRBs and are approved by TLC before they’re posted. The best way to get support, though, is to have someone you can confide in — whether it be friends, a therapist, or your parents.
(All images courtesy of Mackensie Freeman.)