It’s hard to remember the time when my sister used to have hair. Most of my memories start when she was diagnosed with Alopecia at just three years old (I was four). Alopecia is a condition that generates loss of hair. There are three types of Alopecia: Alopecia areata, totalis and universalis. My sister has alopecia universalis, which is the type of alopecia where you lose all of your hair. All of it, even eyebrows and eyelashes. Is not dangerous. It doesn’t affect your health whatsoever, it just gets rid of the hair. And there is not a cure yet.
At the time, I didn’t realize that not having hair (especially for a girl) was uncommon. However, as I started to become more aware of my surroundings, I realized there were no bald dolls, no bald girls on TV or at school… I noticed people around us staring at my sister, whispering between them, looking away, and then staring right back. It didn’t take me long to figure out why that happened. She was unique, and she had no hair, of course she would generate curiosity around her. I never felt uncomfortable by the attention; most people were not being rude. They were just shocked to see a girl like that. And every time I interacted with my sister, she always had a smile on her face, which made me think she had no issue with being different. However, there was a lot that I didn’t know about.
Once I was a little bit older, my mother told me that she found my sister (when she was little) in the bathtub with a bottle of glue. She was trying to paste the little hair she had left back on to her head, so she could play with the girls at school because princesses were not bald. I imagined some kids would be mean because she wasn’t like them, but that didn´t surprise me. What really caught me off guard was seeing Mia being so affected by it. I never realized that having no hair was causing her enough pain to hurt herself like that. I didn´t understand why she would care so much about what people at school thought when she had our family to support her. However, my mother made me understand this wasn’t just about those girls. It was about everything else. For most of us, inside and outside of school, Mia was the only bald girl we knew, and even though not everyone was rude to her for that, she just didn’t fit in. Every day, someone would stare at her and remind her that she was not normal. And for a very long time, my sister felt as if something was wrong with that.
Mia tried a few treatments to grow hair again, but nothing ever worked and even if she made some progress she would always go back to the beginning. Knowing there was nothing to do was not easy on our family, you don’t ever want someone you love to feel like they don’t belong. But when we realized there was no hope for a cure, we understood this would be something that Mia had to learn how to live with.
She continued going to school, making friends, and living a normal life. We never let her have pity on herself for looking different, she had to keep moving forward, even with the awkward looks. Sometimes she would wear a wig, but it didn’t feel right, at least not back then. It felt as if she was trying to hide her true self because the bald version of her was not good enough. That’s why my mom never encouraged her to wear wigs, although that changed with time. Mia had to understand that not only was okay for her to be different, but that beyond that, she was beautiful in her own unique way. Feeling pretty was just as important to Mia as to any other girl, and back then there were not a lot of bald women to look up to in Mexico, or at least not that we knew of. My sister saw an opportunity in this. She realized that the looks that bothered her so much came from a place of ignorance. People were not used to seeing bald girls, but maybe if they were, it wouldn’t have to be something weird at all. This is what inspired her to create a blog alongside my mom, in hopes of giving more visibility to alopecia.
Spreading information about alopecia gave Mia more confidence and self-esteem. Most people were not trying to be rude; they just didn’t know what alopecia was, and Mia could be the person to explain it. These goals to spread awareness eventually led us to the Children’s Alopecia Project (CAP), a foundation focused not on finding a cure for alopecia but instead on spreading awareness and creating confidence for kids. Thanks to CAP, Mia got to meet other girls her age with alopecia, I met the brothers of those girls, and my parents met their parents. We found a place that showed us Mia was not the only one. CAP helped Mia embrace her identity as a girl with alopecia with courage, and pride. This is why we decided to team up with CAP to expand the foundation to Mexico. Mia became the role model she needed for other Spanish-speaking kids, and thanks to her, many of them were able to accept themselves just the way they looked. I will never forget the time when one of the girls Mia was talking to decided to take off her wig for the first time in front of her school, in big part thanks to my sisters’ encouragement. My family managed the Mexico foundation for a very long time, but unfortunately, we never had the reach we wanted, which is why eventually we stopped. Still, during that time we were able to educate a lot of people on alopecia, and how beauty doesn’t rely on looks.
Time has passed, and Mia’s relationship with alopecia has evolved differently. She now wears wigs sometimes because it helps avoid uncomfortable looks when she goes out and because she likes how she looks with hair too!!! But unlike when she was very little, she doesn’t use them because she feels like she is not beautiful. She KNOWS she is beautiful with or without hair, wig, or no wig. Mia has done amazing things with her life, and even though it’s still hard for her to deal with alopecia, she has never let her condition get in the way of her adventures. She has friends, she parties, she kisses boys (yuck), and she just went on a 10-month journey in a sailboat across the world. She knows that what makes her different makes her herself, and especially, that being herself is what makes her awesome!!! My sister has taught me so much about courage and not letting anything make you feel like you don’t belong. Maybe a cure will be discovered, or a bald woman will be as normal as any other. But even if that never happens, Mia knows exactly who she is, and that is good enough.
September is alopecia awareness month, which is why I’m writing this blog. For anyone who is reading this, you are beautiful just the way you are, with hair or no hair. Short, tall, skinny, or not. It doesn’t matter what other people think because true lasting beauty begins and stays in the heart. If you or anyone you know has alopecia and might need some support, contact CAP, they did a lot for our family!!! To end this blog, I want to leave some words from my sister Mia:
“Growing up with alopecia is not exactly easy, I’ve been called many names, and been told many hurtful things just because I have no hair. It is not easy, and even for me I’ve grown up with the support that I have, there are days that are harder than others. But if you ask me if I would change anything, I wouldn’t, I think my alopecia is part of who I am today. And it has shown me to be strong, and that even if days are hard, I am beautiful no matter what I look like. With or without hair. My wish is that I can help people realize that beauty goes beyond looks, rather beauty is within us. If you need help, reach out, and talk to those around you. If you see someone that looks different than others, be respectful, don’t assume. Ask, and be kind. Defend others when they are not being treated correctly. Be the change, we all have the power to be so, but it’s not going to happen until we believe it ourselves.” – Mia Godoy
Thank you for reading, and let’s spread kindness around the world!!! – Iñaki Godoy