Ebony reflects on how living with alopecia areata has affected her personal relationships and how she learned to navigate them.
Ebony: Some challenges that I deal with include friendships and relationships. I’ve faced a lot of scrutiny for my alopecia. A lot of people who said they were my friend turned out to be someone else—they weren’t who I thought they were. It was frustrating for me because I thought all my friends over the years had my back, and they made me feel bad for my appearance. When I was dating someone a few years ago, he made a very rude comment and tried to put a time frame on when I should reveal my alopecia to him. It was disheartening because this was the first time I’d ever been in an intimate relationship. I was rejected heavily over the years because of my alopecia. When he made those comments, immediately I felt like something was wrong with me because this is something that I can’t help having. A lot of people have tried asking me to cover up my baldness. “Can you wear a wig when you come out with us? Can you wear a wig when you go to this event?” A lot of people misconstrue me getting ready every day—wanting to be dolled up, looking nice—for gaining attention. All of us deal with confidence issues at some point in our lives. At times I would talk myself into going somewhere because of the way people have treated me in the past.
I address some of those challenges by having conversations with them. I ask them, “Why would you say this to me? Why do you feel like you have to make these comments or gestures knowing that I’m dealing with something that I can’t help having?" A lot of times people don’t like to be confronted. They don’t like being put on the spot. But these are important, healthy conversations that need to be had so that we can all be on the same page, or at least so I can get a better understanding of why they feel the way they do. At the end of the day, you shouldn’t mistreat someone just because of their difference or appearance. It was challenging, but after having the conversations, we’re able to resolve everything.
The financial challenges that alopecia has had especially concern my mom. I grew up in a single-parent home. When I started losing my hair for the final time, I was 9 years old. That’s when she created my first headband wig. These weren’t available in stores in the early 2000s. Back then we had to go to a hair store at least 35 to 40 minutes from home to find a wig that was suitable for me when it comes to the style, the fitting, and everything. My mom and I together have spent hundreds to thousands of dollars on cranial prosthetics. This was going on for at least 15 years without any financial or medical coverage.
Transcript lightly edited for clarity.