Ebony explains challenges that significantly affect her day-to-day life such as social discrimination.
Ebony: Some of the significant challenges I face day-to-day dealing with alopecia include bullying, people mistreating me because of my appearance—discrimination if you will. There were several instances where teachers at my grade school tried suspending me for wearing hats and wigs to class. They were against the dress code. My mom had to travel to my school multiple times, explaining to educators what alopecia is, how it affects her as a parent, and what the school can do to accommodate me best, making sure I receive an education.
Alopecia impacts my quality of life by having to make multiple adjustments. Alopecia is life-altering. As a woman, I’ve gone through different changes, worn wigs, had different cranial prostheses. It was challenging fitting in with other children at school, participating in daily activities, and living a life of normalcy.
Alopecia has affected my social life in a positive and a negative way. I’ve always been a social person when it comes to being in public, but I’ve also dealt with some insecurities, wanting to fit in. When it came to adulthood, I didn’t have to deal with the effects of it as much until getting into a relationship. That’s when I found out for myself that not everyone is going to be accepting of this. It was hard for me to deal with the rejection, but I’m grateful for the experience because it showed me that I’m stronger than what people think I am and that I can live my life and be confident in my skin. Many people have said negative things to me over the years, made me the joke of their conversations, and said inappropriate statements. But I’ve definitely bounced back from everything, and I’m grateful.
Alopecia has affected my participation in daily activities by having to adjust my wig multiple times. I can recall playing a sport in high school, and my wig almost came off during practice. I was really stressed out because no one at the time knew of my condition, and I was afraid of being embarrassed by my teammates and my coach. It kept me from wanting to do all the things that other kids had the ability to participate in. Once I revealed my story a few years ago, I decided to stop wearing the wigs and be free from the restriction so I can enjoy myself and have fun.
Transcript lightly edited for clarity.