The Way We Talk About Facial Paralysis Matters

ICYMI, Justin Bieber has recently confirmed that he has Ramsay Hunt Syndrome, a condition that causes partial facial paralysis.

 

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A post shared by Justin Bieber (@justinbieber)

“Obviously as you can partially see from my face I have this syndrome called Ramsay Hunt Syndrome, and it is from this virus that attacks the nerve in my ear in my facial nerves, and it’s caused my face to have paralysis. As you can see this eye is not blinking. I cannot smile on this side of my face. This nostril will not move. So there’s full paralysis on this side of my face,” he says to his fans, also confirming and explaining the further cancellations of some of his shows.

The way we talk about facial paralysis is so important, as stated by Mighty community member Dawn Shaw in their story, “Why Do People Call Me Brave When I’m Just Living Life?“

“I don’t understand why people call me brave.

I accept it as a compliment, even though it puzzles me.

This is the face I take into the world every day, and I’m OK with that.

I’m pretty sure they are referring to the fact that I go out into the world with a face that looks like mine, but how is that brave? It’s all I have known, and besides, what’s the alternative? Hiding myself away?

Perhaps they assume I must deal with stares, questions, comments and taunts on a daily basis. I do experience these things periodically but not daily. That certainly would put a damper on getting through each day, but even then, we learn to adjust. I just live my life. How is that brave?

Perhaps they consider me brave because I speak publicly to both kids and adult groups about accepting and embracing differences in both themselves and others. I’m comfortable speaking to groups, and it’s important for me to get my message out. So still I ask, how is that brave?”

A lot of people are now either learning about Ramsay Hunt Syndrome from Justin’s video, while others have come out with their own stories talking about how terrifying it really is. Thankfully, Justin is loved and supported by millions of people (do they still call themselves Beliebers?) and that’s so crucial in recovery, as community and support is everything. 

That’s why The Mighty exists. Having a community around you to be able to talk about life with your lived conditions, especially conditions surrounding paralysis whether it be bell’s palsy, cerebral palsy, or Ramsay Hunt Syndrome. You’re not alone, even when you may feel like it.

Oh and by the way, feel free to read the rest of Why Do People Call Me Brave When I’m Just Living Life here and go show some love.