In a world where girls have hair, I stand out.
At first glance, you might think I have cancer. I don’t look like your average 19-year-old girl because at age seven, I was diagnosed with alopecia totalis, an autoimmune disease that causes hair loss. Autoimmune diseases are a lifelong death sentence, and alopecia is no exception. “No cure” means my disease is visible to all, a defeat, and provides no sense of belonging. When I chose Louisville, Kentucky, to study at university, I believed this new city would provide me with opportunities for growth and new resources for my disease. But Louisville, you have disappointed me. How can a city that prides itself on its diverse and multifaceted people lack a basic support system for those with autoimmune diseases? The community I have been searching for my entire life is still elusive.
The real issue here is that “community” is more than just people. Community is mutual respect and understanding—the feeling of belonging. That’s what behavioral health expert Dr. Sandra Cumper Boynton says about social connectedness. Although I don’t let my alopecia define me, this disease has held me back from being the best version of myself. In a world where girls have hair, I stand out. I grew up never knowing a single girl who looked like me, so I built a distorted self-image around the idea of looking like everyone else. For years, I didn’t belong. I still struggle with the idea that I’m “socially connected” to others.
My alopecia has prevented me from being the best version of myself
When I first arrived in Louisville and visited a medical transformation center, I thought my experience with alopecia was about to change. Here they had cellular and regenerative medicine—the latest medical technology—and yet I was told that none of these treatments would work for me. In fact, I seemed to be part of the problem. First, I was just stressed. If I reduced my stress levels, my hair could grow back. Then my diet was the problem. Gluten was causing my alopecia—no, wait, dairy.
I’m sick of being teased and bullied until my parents’ pockets are empty and my soul is shattered. Instead of false hope, I need someone to admit that there is no cure. All I need is some support. A hand to show me how to carry on living with my illness. A group of people to reassure me that I’m not alone. A real sense of belonging and connection.
Not long ago, I met another person who looked like me. She is the only person in my life who can relate to my story. After living with alopecia for 14 years, I finally have someone I can turn to for support. Granted, alopecia totalis is rare, affecting only 0.08% of people worldwide. But in a city of over half a million people, I know my friend and I are not alone in Louisville.
If you or someone you know is struggling with belonging because of an autoimmune disease, we want to find you, see you, know you, and value you. Social connectedness shouldn’t remain a dream for us. We shouldn’t have to live in fear that our reality will never change. And Louisville, we need you to stop ignoring us and bring us closer together.
Agree or disagree? Send a letter to the editor here.
Olivia Stone is a student at the University of Louisville planning to major in English and minor in communications. As a creative writer, she is inspired by her own experiences to tell her story in hopes of catching the attention of her community.
