One Woman’s Alopecia Made Her Rethink Society’s Definition of Beauty

One Woman’s Alopecia Made Her Rethink Society’s Definition of Beauty

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(Image credit: Instagram/@KylieBamberger)

My alopecia started with a few bald spots here and there, ones I could easily cover up with strategically placed French braids. I was 12 years old at the time, and I wasn’t too worried about my hair. I usually wanted it out of my face anyway.

By the time I was half-way through high school, it got worse. I’ll never forget spring break of my sophomore year: I was looking forward to a week off with my friends and boyfriend—sleeping in, not worrying about homework—but my hair started falling out like crazy. I took a shower mid-morning, and I could feel more bald spots on my head. When I pulled my hands out of my hair, strands covered my wrists, all the way down to my elbows. It was really graphic.

Over the course of that week, my hair would clog the shower drain and I’d wake up to a pile of hair on my pillow every morning. On a windy day, strands of hair literally blew away and landed on one my friends. But the thing with alopecia is, you never know if it’s going to get better or worse, so I waited it out for a few months.

It didn’t get better and I knew I needed to address the problem. First, I got a bob to hide the fact that my remaining hair was super thin, which was a big deal because I used to have really long hair. People at school were already taking notice, but even didn’t know what was going on, so I couldn’t answer any questions. I think people thought I was dying.

And for a while, doctors didn’t know if I was. I was constantly leaving school for appointments and tests, but no one could figure out what I had. They were testing for serious things like lupus and cancer. This has been going on for three years, how could this be alopecia? It was by process of elimination that we came to the conclusion it was, in fact, alopecia. Once we reached that verdict, almost all medical professionals were speechless. No one had answers. At the end of the day, we only understood this: Alopecia is an autoimmune disease with no known cause or cure. So, there I was: Fifteen years old with a diagnosis and no solution.

Of course, I’m glad all the tests came back negative, but I hated looking sick even though I really wasn’t. That’s why I decided to shave my head. I was done feeling like a victim, done holding on to something I might not ever have again.

Shaving was a way to take my control back from alopecia, and it felt good. My family and friends made a whole thing out of it (you can watch the video on YouTube): We listened to Breakaway by Kelly Clarkson, my mom drank wine, and everyone took turns trying on my new wig. It was a fun way of accepting the cards that I was dealt and moving forward with life. I was regaining control of something I let control me.

I was regaining control of something I let control me.

I started wearing a wig from there, which seems counterintuitive, but shaving was more about moving onto the next step. I loved my wigs, but they held me back in a lot of ways. For starters, I avoided swimming like the plague, which is a big deal in southern California where I’m from, and I never went to Disneyland or Six Flags with my friends because I obviously couldn’t go on roller coasters with my wig on. It kept me out of the social scene for a long time.

I first started ditching my wig for practical reasons. If you’ve been to SoCal in the summer, you can imagine why. Temperatures can reach 100-plus degrees, and wearing a wig is a lot like wearing a beanie: hot. I also played soccer and I promised myself I wouldn’t wear my wig on the field—it would interfere with my game!—so I wore a hat instead.

But even the hat didn’t stay on all the time. I was playing goalie during a tournament in the desert my sophomore year of high school, and I threw my hat to the side and charged full-force at the ball. It was one of those scary one-on-one moments between a goalie and striker, when you need to make the decision to either come out and meet your opponent in the 18-yard box or wait for her to make a shot. I certainly wasn’t waiting, and I wasn’t going to let anything stop me—least of all a stupid beanie. I beat her there by a blade of grass, kicked the ball away, and turned the momentum of the game in our favor. It was such a climactic moment for the game, for the weekend, and for me. It’s when it hit me that my hair—or lack thereof—should never hold me back.

Soccer helped me in other ways: My teammates accepted me for who I was, and they encouraged me to become more comfortable with myself. They made me realize that anyone who can’t accept my alopecia doesn’t deserve to be in my life.

My husband, Cy, played a big part in this epiphany, too. We met in college, while I was still on and off with my wigs. I had a weird relationship with wigs and dating. I always thought wigs were a must when it came to being attractive, but I was so unhappy wearing one that there were inevitably pictures of me without it.

So, when we started dating, Cy knew I was wearing a wig; he just didn't know why. Once we had the alopecia talk, he explained that if I was going to wear my wig, not to wear it for him.

This was a big deal, because whenever I had the talk with a guy I was talking to or crushing on, I was so overcome with anxiety that I almost always cried in either fear of rejection or overwhelmed with thoughts that someone could find me beautiful during a time when I didn't. He embraced my beauty even before I did.

That was over six years ago, the very last time I ever felt the need to wear a wig. He pushed me to focus on myself and not the thoughts of others. Finding happiness with him meant finding happiness within myself.

I didn’t even make an exception for my wedding day. It felt really important to be true to myself on such an important day. I didn’t want to look back at my wedding pictures 20 years from now with my kids and have them say, “Mommy, why did you wear a wig?” I wouldn’t be able to answer that question.

Alopecia definitely stopped me from living a different life, but that doesn’t mean it would have been my best life. I would have never modeled—I would have looked too much like everyone else. My wedding would have never been in People magazine. I wouldn’t have learned who my real friends are. I wouldn’t have met so many inspiring people at alopecia events.

The thing is, alopecia isn’t physically painful; it’s all aesthetic. The pain comes from society telling women they need to look a certain way, which is total bullshit. People give women personality traits based on their hair: redheads are seen as spicy, women with beachy waves are chill. What does baldness signify, then?

It took me a while to get to this place. At first, I felt like I was stripped of my femininity without my permission. But now, baldness means shunning society’s expectations. It means redefining beauty. It means not throwing my money at treatments and beauty products to look like everyone else. Trust me, I know hair loss is hard, but once you realize beauty isn’t a fashion ad, it’s amazing how much better your life becomes. Try it and tell me how it goes.

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Kiera Carter

Kiera Carter has a decade's worth of experience covering fitness, health, and lifestyle topics for national magazines and websites. In a past life, she was the executive digital editor of Shape and has held staff positions at Fit Pregnancy, Natural Health, Prevention, and Men’s Health. Her work has been published by Marie Claire, Cosmopolitan, Travel + Leisure, and more. She spends her free time boxing, traveling, and watching any movie or show with a strong female lead. She is currently based in New York.