At first glance, you may assume I have cancer. I do not look like the average 19-year-old girl, because at the age of seven, I was diagnosed with alopecia totalis, an autoimmune disease that causes the loss of hair. Autoimmune diseases are a life sentence and alopecia is no exception. "No cure" means my disease is exposed for all to see, manifesting defeat and preventing belonging. When I chose Louisville, Kentucky, for college, I believed this new city would provide opportunities for growth and new resources for my disease. But Louisville, you failed me. How can a city that prides itself on diverse and eclectic people lack a basic support system for people with autoimmune diseases? The community I have been searching for my whole life is still yet to be found.
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. While I do not let my alopecia define me, this condition has kept me from being the best version of myself. In a world where girls have hair, I stand out. I grew up not 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 did not belong. I still struggle with the idea that I am "socially connected" to others.
My alopecia has kept me from being the best version of myself
When I first arrived in Louisville and visited a center for medical transformation, I thought that everything about my experience with alopecia was about to change. Here was cellular and regenerative medicine-the latest in medical technology-and yet I was told that none of these treatments would work for me. In fact, I was part of the problem, apparently. First, I was just stressed. If I decreased my stress levels, my hair could come back. Then, my diet was the issue. Gluten was causing my alopecia-no, wait, dairy.
I am done being picked and prodded until my parents' pockets are empty, and my soul is crushed. 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 continue living with my disease. A group of people assuring me that I am not alone. A real sense of belonging and connection.
Not too long ago, I met another person who looked like me. She's the only person in my life who can relate to my story. After fourteen years of living with alopecia, I finally have somewhere to turn for support. Admittedly, alopecia totalis is rare, with only 0.08% of individuals worldwide who experience this condition. But in a city of over a half million people, I know my friend and I are not alone in Louisville.
If you or someone you know struggles with a sense of belonging because of an autoimmune condition, we want to find you, see you, know you, value you. Social connectedness for us should not have to be a dream. We should not 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? Submit a letter to the editor here.