My journey with Alopecia Areata
The best gig I ever played was in the summer of 2017 at the National Alopecia Areata Foundation. For those of you who don’t know, alopecia areata is a specific kind of hair loss that is caused by the immune system attacking hair follicles. I was diagnosed with alopecia areata when I was three years old, and within a year, the autoimmune disease had quickly progressed into its rarest form, alopecia universalis, or total body hair loss. My panicking mom found the only alopecia areata specialist in the country at the time, who happened to be in San Francisco, near where I grew up. She gave us the rundown of possible treatments, like regular steroid shots in the head, or cream that irritated the scalp in order to promote temporary hair growth. To this day there are no FDA-approved treatments for alopecia, and once someone has lost all of their hair, the probability of it growing back becomes slimmer. As a 3-year-old, I couldn’t care less if my hair grew back or not, and to my parents’ credit they respected my wishes to stay off medications.
As I got older it began to sink in that people were treating me differently because of how I looked. Each time I went out in public there were stares and whispers, people asking my parents how my treatments were going, wanting to pray for me, or just generally assuming that I was undergoing chemotherapy. Children (and adults!) tried to take off my hat. As a child, the stereotypes hurt and the attention on my head became a source of anxiety for me. The annual conference held by the National Alopecia Areata Foundation was one place where being bald was normal and celebrated. Once a year I got to play with other kids who looked like me. I felt pride when I was there and would come home singing “Free to Be You and Me” with a renewed love of my smooth head.
Fast forward to my teenage years, and I had stopped going to the conference. I also had decided to dive into the world of wigs for the first time. Having hair, even if it wasn’t mine, brought security, and I liked being able to go about my day without having to explain why I was bald to complete strangers (which is something I still enjoy). I felt prettier and more feminine (because now no one asked whether I was a boy or a girl). The downside was that wearing wigs also brought a sense of secrecy around my alopecia and I became uncomfortable talking to even my closest friends about it. It made it harder for me to do normal things like date or go on sleepovers because I was afraid to tell people that I wore a wig. Occasional comments about my lack of eyebrows or “scary” hairline would remind me that I could ignore alopecia, but I couldn’t make it go away. Sometimes I imagined growing old without ever letting people see me without a wig, but other times I imagined a future me who was unafraid to be different and who stood up for people who faced similar challenges. Music became a beloved safe place that I could always count on.
In the years after high school I took baby steps, opening up to friends and significant others, going in public without my wig, and slowly building up evidence that the world wouldn’t end if everyone knew I was bald. Finally, as the 2017 conference approached, I decided the time had come to reconnect with the alopecia community and also let my fans in on this important part of my life. Before I boarded the plane to Miami, where I would be performing throughout the week without my wig, I uploaded to social media a picture that my friend Kaitlyn had taken of me standing outside my house. The picture looked like the strong woman I had imagined as a teenager. She was smiling and her bald head was shining for the world to see. I didn’t feel confident as I hit send, though. I felt scared and almost sad that I had let the part of me go that was pretending to have hair and pretending that my life had been “normal.” I was petrified at first to leave my wig in my hotel room and join the conference. Staring at the mirror, I thought I looked unfinished without my wig. Even though almost everyone else there was bald, the irrational fear that I would be judged by my appearance crept back in.
Throughout the week I was surrounded by beautiful women and men who truly loved themselves and wouldn’t grow their hair back if they could. I began to realize that if I felt ashamed about being bald I was also casting shame on these people who clearly had no tolerance for that. We all had strikingly similar experiences living with alopecia. I recognized that it must be possible for me to start accepting and celebrating what made me unique just as they had. Slowly I felt parts of myself unfolding and softening. Support also flooded in from fans, friends, and acquaintances who had seen the bald picture of me online. I was so relieved and thankful for the love people showed me in that vulnerable moment. I played for a group of bald children and afterward I started to get angry at the voices in my head telling me that I would be prettier and happier if I had hair. Looking at the adorable kids who were happy just being themselves, I knew that these negative beliefs inside me were not truly my own.
I went to the conference the next year and performed again but it was a different experience. So much had changed in a year and I no longer felt the fear or urge to wear my wig. I felt more like one of the relaxed, confident women I had met the year before. I played for the kids again and met a girl who I now have mentored for almost a year! That week I realized that after 22 years of being bald I wouldn’t have it any other way.
Having alopecia has taught me that there is nothing “normal” about everyone being the same. Humans are beautifully diverse. We all have work to do to make our world a safer and more welcoming place for everyone regardless of appearance, race, age, sexuality, gender identity, disability, or anything else that makes us human. Many of us mean well and don’t realize when we’re using hurtful stereotypes and creating stigma. I think that as a society we can start to heal by educating ourselves and listening to each other’s stories. I hope that by sharing mine I can make the world a better place for the bald kids of the future. Thanks for listening!
What is Alopecia Areata?
Alopecia Areata is a common autoimmune skin disease, causing hair loss on the scalp, face and sometimes on other areas of the body. In fact, it affects as many as 6.8 million people in the U.S. with a lifetime risk of 2.1%.
People of all ages, both sexes and all ethnic groups can develop alopecia areata. It often first appears during childhood and can be different for everyone who has it.
For more information, visit the website for the National Alopecia Areata Foundation.