Last September marked the first year of her life my friend Nicole celebrated Alopecia Awareness Month. A few months prior, she went public with her story on 7 Billion Ones and began living wig-free. It was the first time in 31 years she felt ready to talk openly about her story with alopecia - a condition that caused her hair loss around age 6.
She posted a series of pictures on Instagram to raise awareness. I joined in and blogged about cutting off my hair and donating it to kids with alopecia. Friends and family rallied around her to celebrate.
Over the past year, her big smile has lit up many rooms. Silent strength echoes from her bald head. She’s received hugs and words of encouragement for her courage. But, as anyone who lives “differently” knows, she’s also received a full range of uncomfortable responses, rude reactions, awkward stares and foot-in-the-mouth comments.
As I’ve watched her receive a decent amount of “what not to say” remarks, one thing I’ve admired most about Nicole is the grace she gives others. She realizes they simply don’t understand.
To raise awareness this year, I asked her for advice. To reduce the uncomfortable comments coming from a lack of awareness and to increase the support and encouragement, here’s what Nicole says is helpful to say to someone with alopecia:
1. “You are Beautiful!”
Being called beautiful is life-giving to anyone, and especially women. But many people living with alopecia struggle to believe they are beautiful. Telling someone with alopecia “you’re beautiful” is one way to offer love and encouragement.
2. “You are really brave!”
Those living with alopecia are living brave! It’s not easy to not have hair. (P.S. - It’s not “just hair.”) Many with alopecia feel the need to hide; so many live in secret silence out of fear and shame. If you see or meet someone with alopecia, let them know you appreciate their strength!
3. “Wow, your story is inspiring!”
Overcoming a difficulty or challenge is inspiring and sharing about alopecia can be hard. If you meet someone with alopecia who is open about their story with you, tell them you’re inspired! As Nicole explained it, “I hope my story helps other people do something in their lives they’re afraid to do.”
4. “What is alopecia?”
A few months ago, Nicole began donning a hat she bought from Alopecia Apparel. Thanks to NBA player Charlie Vllanueva who also has alopecia, there’s a line of trendy shirts and hats that give alopecia advocates a way to educate people who’ve never heard of it. Nicole wears her hat almost everywhere she goes. “It’s helpful when people just come up and ask me what is alopecia - it gets the conversation started.”
5. “I know a guy…”
If you meet someone with alopecia and you already know someone with alopecia - make sure to tell them! Hearing you’re not the only one facing any condition, especially alopecia, is always comforting. Swap stories and contact information so those with alopecia can connect.
If you are living with alopecia, you are not alone!