“Girls are pretty when they have hair.”
This was what I was told and made to believe growing up after losing my hair at age 2, due to the autoimmune condition alopecia. This was so much more than just losing my hair, it was losing part of me.
I was born with a head of beautiful red hair, but it began to fall out, first in small chunks and then within a few weeks I was completely bald. When this happened 27 years ago, I knew no one else in my community or school with this condition. I felt embarrassed, ashamed, and ugly and saw nothing beautiful about my bald head. I didn’t want to be different than the other kids. As a child, was hard to have a visible difference. I began to wear a wig from a very young age. It became my security, my hiding place from the reality I never wanted to face. I had this huge secret I kept and never knew how to or wanted to talk about. I became quiet and reserved.
It was already hard enough being a kid and going through all the life changes and curveballs that were thrown my way. Middle school was really hard, as it is for most, but add a difference and it was a time I still wish I could forget. I have alopecia universalis, which is total body hair loss. I now see this as an awesome advantage to never have to shave my legs, but growing up I did not. It is hard to not have eyebrows or eyelashes for several reasons. I had a wig to cover up my bald head, though this never stopped kids from commenting on it, asking why it was often frizzy or didn’t move like “normal” hair.
Kids knew I wore a wig, but I still did my best to hide it. But, having no eyebrows was the hardest. It stands out on my face. I have my brows tattooed on now and got this done in middle school. They are a light color and have no hair. I need to fill them in with make-up, which I didn’t do every day. I played sports and would sweat a lot. I also didn’t feel comfortable with make-up on. This was the hardest for me to navigate. I didn’t like the way I looked. I would walk with my head down, avoided eye contact with people and tried to avoid looking at the mirror because I saw someone who was anything but pretty. To me, what was attractive about a bald head, no eyelashes and tattooed-on eyebrows? Nothing.
During this time I continued to stand out from my peers, but this time it was in a positive way. I discovered the game of basketball, and it truly saved me after a hard day at school. I would come up and shoot hoops in my driveway for hours. I would pretend to make the game-winning shot, the crowd would go wild and yell my name. Everyone loved me, and no one made fun of my alopecia. During this time I never thought about my alopecia, but rather my big dreams.
I wanted to play on my high school varsity team as a freshman, to break school records, and to receive a scholarship to play in college. Basketball became my distraction. I would work hard in school, and couldn’t wait to come home to play basketball and eventually played on the school team. Kids continued to make fun of me, but it bothered me less because I had something else to look forward to, something positive that made me feel so alive and excited.
I never told the teacher when kids would make fun of me. I had no confidence in myself and didn’t want those kids to dislike me even more than they already did. And in a way I felt like I deserved it, because there was truth to what they said. When they called me “baldy” or said “Lindsay is a boy” or “ugly” it was true, or so I believed. When I look back on this season of life, I still never understand why kids were mean to me.
Life continued over the years. I started to gain more confidence in myself and became more outgoing through my success in basketball and a few close friends I had made through sports. But my alopecia was still a big secret I never talked about. I would go into the bathroom stall at halftime of basketball games in high school, wipe down my head and reapply the tape that held my wig on. It was just my life and I never knew any different. I worked hard in basketball and that was my main focus. I was fortunate to have a great high school and AAU career. I broke countless records at my high school, and received scholarship offers to play in college. This was a dream come true for me and I was so happy.
I went off to college and played basketball; the dream was happening for me. I learned so much about myself during my four years. During my sophomore year of college, I slowly began to look into alopecia and see what else was out there. It was my reality I didn’t want to face, but deep down I knew my hair was never coming back. I was still absolutely terrified to tell anyone about my alopecia, especially guys. What if they didn’t like me? What if they thought I was ugly? I still didn’t see anything attractive about a bald head.
I will never forget when this guy I had the biggest crush on had finally asked me out. Truthfully, I was in shock because he was attractive and I didn’t think I was anywhere close to his league. But we went out a few times and things were going along great. We had so much in common, it was exciting and he gave me butterflies. I also had this pit in my stomach when I thought about telling him about my alopecia.
Eventually, I knew I had to and my worst nightmare came true. He was completely in shock. I will never forget the look of pure disgust on his face. He said, “I could never date someone who didn’t have hair.” I was devastated, shaken to my core and just crushed. It was hard to recover from that. I put a wall up with guys after this and in friendships too. I hated my alopecia and was so upset about it.
But, life continued on. I became very involved in my schoolwork, basketball and volunteering. I loved to help people. I also decided to run a marathon my senior year of college. I am extremely competitive in any and everything and I thought “what a bucket list item to check off.” Before this, I was never a runner, but I thought it was “just running.” Though it might not be fun, I could do it.
In June of 2012, I set off down the streets of Duluth, Minnesota — my college town. I couldn’t believe it; I was running a marathon and enjoying it. I felt alive, strong and empowered. These were all emotions I wasn’t used to feeling. Once I crossed that finish line I knew right away I found my next endeavor. Marathon running. I began to race all over the country. I loved to travel and the thrill of being in a new city where no one knew me. No one knew I had alopecia or cared that I looked different.
My favorite thing about the running community is how different we all look and train. I fell in love with the process and the feelings running gave me. That first marathon changed my life. I was still wearing my wig and hiding my alopecia until one day before the 2016 San Diego Marathon, when I was overcome with emotion and took my wig off mid-run. And for the first time, when I looked at it, I saw nothing beautiful about it. It was dripping in sweat and smelled putrid. I began to cry. This was the moment I had dreamed of since I was a kid, to finally be OK with my alopecia. I knew all of the heartache was worth it. I finally felt like I was the Lindsay I was always made to be.
There were small steps leading up to this moment. Telling a close friend about my alopecia, running an errand without a wig, running marathons, having supportive people and community. I knew I had to take control of this, and once I took one small step, it all began to get easier.
When I look back at my life, so far I can say I am proud of myself. I have run 41 marathons, one 50-mile ultra-marathon and am looking forward to taking on a 100-mile ultra-marathon soon.
Alopecia has truly been the greatest gift I never knew I needed. For a long time, I would deny having alopecia and say nothing positive about it. But now, I love my alopecia. It has made me strong, empathetic and compassionate and shown me I can do anything I set my mind to. It taught me to set big dreams and to never quit. It is the greatest filter for people and relationships. I have had so many opportunities to meet, speak to and share my story with children who have alopecia and be that role model and friend I needed when I was younger, and that is the greatest gift. I started a pen pal program for friends with alopecia as well, because I know what it is like to feel alone and need someone who has been through it first hand to talk to. I know it would have made a huge difference for me, the way I saw myself and thought of my alopecia.
I know I don’t need hair to be beautiful. I am beautiful because I choose positivity, to help someone every chance I get and to work hard in any and everything.
I am alopecia. Strong and bald is beautiful! The sky is truly the limit!