During a brainstorm for “Whatever You Want” week, Beth Sacca, a photographer and member of the MR visuals team, pitched a story with her older sister Mandy, who has had alopecia since she was in high school. Alopecia is an autoimmune disorder where the body mistakes hair follicles for foreign cells and kills them. Below, Mandy shares the evolution of her journey to self-acceptance, from shaving her head to running without a wig.
On finding out she has alopecia, and wearing wigs
When I was in ninth grade, my best friend found a bald spot when she was straightening my hair. I spent the remainder of high school parting my hair a certain way or wearing headbands during track practice to prevent any bald spots from showing. By my senior year, I had a full head of hair, and was relieved to feel like I could finally wear it any way I wanted.
During my freshman year of college, about 80% of my hair fell out. I decided to shave what was left with the encouragement of some girls who lived in my dorm. I sat in front of a mirror in my room, and my roommate shaved my head. I started wearing wigs that month.
Your first wig, when you have alopecia, is free with most health insurances. However, your first wig is easy to get wrong. I had no idea what I was doing. I wish I could help people who are buying their first wigs so they won’t make the same mistakes I did. My first wig lasted about one month, because I got a synthetic one.
I learned the hard way that when you try to straighten a synthetic wig, it ruins the hair. It’s also challenging to work out while wearing one because you can only wash it once a week, and the heat from my neck would sometimes melt the hair. After that, I began the long process of educating myself about the world of wigs–lace front, full lace, synthetic hair, human hair, open weft, closed weft. How do you glue down a wig? Are you even supposed to glue down a wig? I looked like an idiot for a good portion of the next couple years while I was still figuring things out.
On running with alopecia
I’ve always been a runner. I ran competitively in college and ran a marathon right after finishing school. During alopecia flare-ups, I would wear a wig with a baseball cap because it felt most secure, but that came with its own set of challenges. One time at a track meet, the guy who was supposed to shoot the starting pistol stopped everyone at the starting line and asked me why I was wearing a hat.
I only recently started running outside without my wig. This was a big moment for me because I’m confident completely bald and I’m confident with a full head of hair, but if it’s patchy I start to doubt myself. However, at a certain point I decided I didn’t want to wear a full suction wig for 6 miles in 90-degree heat. Running without my hair gave me a new type of freedom and ownership over my body.
In my last few years of college, I started losing my eyebrows and some of my eyelashes. I didn’t have hair anywhere on my body. Granted it was nice not to have to shave my legs.
I could tell that sometimes people looked at me and assumed I wasn’t confident because I wore a wig and covered up my bald head the majority of the time. It was a struggle when people, especially family members, told me things like, “you don’t have to wear your wig.” Many tried to give me confidence to let the wig go. This really frustrated me. It was my choice to wear a wig, and at a certain point I was confident enough to not wear a wig but still chose to.
Ultimately, it was less about confidence and more about the fact that I love picking out outfits and doing my hair in different styles. Without hair, these interests felt less fun. Also, to be honest, my head gets COLD, like so cold, and if I was forgoing a wig, I’d have to wear a hat to keep warm in upstate New York most of the year. To me, there’s no difference between a hat and a wig. When people say “you don’t have to wear your wig around me” they think they’re making me feel comfortable, but in actuality they’re making me feel bad about my choice to wear hair.
I love when girls with Alopecia rock their bald heads, and I love when they play with wigs and hats. It’s your choice to wear whatever you want on your head, and it doesn’t change how confident you are if you prefer one over the other.
I never really feel different unless I’m confronted with a situation when there’s something everyone else can do that I can’t. Before alopecia, I loved the beach and looked forward to diving into the waves. I never thought that one day I wouldn’t love it, because my hair would fall off in the water and a man would pick it up further down the wake. I never thought I would be nervous for a race not because the competition was tough but because my wig tape wasn’t stuck on right. The thought of having to hold my hair on while riding a rollercoaster, or deciding when to tell my boyfriend I was actually bald, would have never crossed my mind before Alopecia. I usually tell guys on the second date that I don’t have hair, if they haven’t already noticed. Sometimes I get worried they won’t accept me because of it, but if they don’t then they’re not the right person for me anyways.
Over the past year, my eyebrows and most of the hair on my head has fully grown back. This was such a surprise to me, as I had been completely bald for over 7 years. I almost have a full pixie cut now. I still wear a wig most of the time because I love long hair, but occasionally I’ll wear the pixie cut. I am hoping that this hair stays put, because it would be so much easier to maintain on a day-to-day basis than a full wig. I’m not relying on that, though. I’m in a place where I am so okay with whatever this hair of mine decides to do, and I’m excited to see what happens next.
Photos by Beth Sacca.