By Sheryl Ruszkiewicz*
I was first diagnosed with Alopecia areata at the beginning of fifth grade, right before picture day. The first bald spot appeared on the hairline above the middle of my forehead. My mom tried desperately to recruit every strand of my bangs into a dramatic side part to cover the offending bald spot. To make sure the hair stayed still for photos and the remainder of the school day, she plastered down my hair with a concoction of gel and hairspray. Being self-conscious that the camera would somehow reveal my bald spot, there is only a hint of a forced smile on my face.
Alopecia areata is an autoimmune disease where circular spots of hair randomly fall out due to the immune system being overprotective and attacking hair follicles. The cause is still unknown, but there is some connection between childhood trauma and autoimmune diseases in general. When I was first diagnosed, it was believed that stress was the trigger, which led to a feedback loop of doctors, teachers, and family members asking if I’m stressed, and fifth-grade me becoming more stressed by the continuing bombardment of questioning. Because my first bald spot occurred when I was young, there is a strong likelihood that I will not “grow out of it,” and will have to go through the cycle of a bald spot appearing, the spot expanding, the spot doing nothing, the spot regrowing, and then start over with a new bald spot in a new location.
Having alopecia marked me as more “different” from my classmates than I had already been. None of my classmates knew anything about my disease, and explaining it didn’t seem to make things better. From that point, I felt more alone, isolated, and convinced that anyone I met outside of my house had x-ray vision and could see my bald spot, and were silently judging me for it.
This became abundantly clear in my preteen/teen years, when I was chastised by an older woman at church for wearing my hair in a heavily gelled bun. Little did she know this was my go-to style to hide my bald spots, especially during cross-country and soccer seasons. This woman, whom my mom knew, was compelled to explain that my hair was as integral to me as a mane is to the lion, and that it was my duty to groom and style my “mane” into a glorious sight for other churchgoers and God himself. Although these words cut deeply, I tried to cover my reaction with a polite nod while returning to eat my chocolate-glazed donut (as well as my feelings).
I am gawked at occasionally. Once at a busy city intersection, a woman took it upon herself to loudly inform everyone walking or driving that I had a bald spot. I held in my emotions for about a quarter of a mile until I reached the parking structure, shut myself in my car, and cried until I could see straight and drive home.
For a woman, society places a heavy emphasis on your hair. It is, unfortunately, construed as part of your identity and societal worth. It is frustrating to see hair in your hands after washing your hair, collecting on your hairbrush, and lightly sprinkled on your bathroom floor. It’s difficult not to feel like you have lost part of your identity or worth with each strand that is missing from your head. It’s difficult to not feel like you are “less” in some way, for reasons that are out of your control.
It took some time to realize that I am not my hair. Although the mane is an iconic physical attribute of a lion (I question why was she comparing me to a male lion anyway), a lion is still a lion even without a mane. The DNA of the lion doesn’t change. Similarly, I am still fully me and still fully valued even with some or all of my hair missing. My personality and identity are still whole. My value is still whole. I still love myself and love my hair because it’s my hair.
*Author’s note: Even though alopecia is a fairly common autoimmune disease, I didn’t meet someone else with alopecia until after I graduated high school. It changed my world to know that I wasn’t alone anymore. This story is for anyone else out there who needs to know they’re not alone, and there is someone else quietly fighting the same fight out there.