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Why My Friend Waited Months to Ask 'What's Wrong With Me'

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Living with a facial disfigurement can be challenging — the stares that last just a few seconds too long, the double takes, the rude comments. For a person struggling to accept their physical appearance, it can be hard not to let these things affect quality of life. Throughout my experiences, though, I’ve found that one of the best ways to deal with people who don’t understand my condition, and who may pass me on the streets and judge my very being as being wrong, is with kindness and humor.

Growing up, people would often make comments about my disease, about my appearance, and I’d play long, because I was taught to accept the fact that I was different.

Most kids got, “I like your dress.” I got, “your eyes are weird.”

“I know, right?” I would joke. Or “Oh, well. Fewer traffic tickets in the future– great peripheral vision.”

And people would laugh uncomfortably, confused as to why the diseased girl wasn’t angry.

Using humor as a coping mechanism gave me a sense of control. When it came to words, it allowed me to take some of the power back. Yes, I am, but different does
not equal wrong.

A friend of mine once told me that she had spent months wondering what was wrong with me before it finally came up in conversation. She told me she spent many nights having back and forth conversations with her mother as to whether she should just ask me why I looked the way that I did. There was no malice intended in what she said, and still, I felt the guilt, the shame, and the embarrassment creep up on me.

What was wrong with me?

I could feel myself becoming flustered and frustrated, but I smiled and kind of nodded. Because I understood, I really did. I do. Still, I felt angry and confused. Not at her. Or at the fact that I’m different. No, I became angry with this assumption that this physical difference of mine is automatically considered wrong.


There’s that word again. The word I hate with every fiber of my being. The word I wish could be completely erased from the English language, because different and wrong should not be synonymous.

I asked this friend of mine why she did not just ask me about my disease, like so many other people I didn’t even know, often did, and her response caught me off guard.

“I did not feel I was entitled to that information,” she said. “I knew you would tell me when you were ready.”

Her response was perfect.

People often act as though they are entitled to my story, but my story is just that — mine. My experiences are mine to share if, and only if, I want to. Just as you would not walk up to a stranger in the grocery store and ask them deeply personal questions about the details surrounding their relationship with an estranged relative or the sordid details of their traumatic past, please do not walk up to me and assume you have the right to know why I look the way that I do. You don’t. Chances are, if you ask, I will be polite and I will tell you, because increasing awareness is important to me, but please be mindful of the fact that there is a time and a place for everything. While, I have chosen to write about my disease and open myself up to help spread awareness about craniofacial disorders, it is important to recognize that it is my choice.

Ultimately, I do want people to want to know about Crouzon Syndrome. I want people to be educated and know that my fundamental being is not wrong, it’s different. My disease is not a secret and when it is approached with kindness and genuine interest, questions are welcomed, because it feels good, freeing even, to have my differences acknowledged, without feeling like I am inherently less than.

My facial disfigurement — my eccentric eyes that bulge just a little too much, that slant just a little too far, that are spaced just a little too wide — they’ll never be considered “normal.” I can’t put make-up on and hide it. I can’t wear certain things or do certain things and suddenly become just like everyone else. I cannot choose to simply blend in. There are no more surgeries left to try. There are no treatments and there are no cures. I am simply me. 

My disease may not be how I define myself, but it’s how others define me. It’s the very first thing they see when they meet me. 

I may not be able to make you understand that sometimes I just get so used to the world breaking me down, that I forget how to put myself back together.

And maybe I can’t make you understand what it’s like to never have a place where you’re the same as everyone else.

And maybe I can’t make you understand what it’s like to have people hate you simply because of who you are and what you look like.

And maybe I can’t make you understand just how tired I get, sometimes, of having to prove myself.

It can be exhausting, knowing, that no matter how much progress I make in learning to love myself and in learning to accept myself, there will always be people who only see the disease — who only see the crooked eyes and the scars. So, I never mind the friends that ask me questions, because the questions open the door for education and for discussion and for understanding. It creates an element of hope. 

Given the opportunity to at least appear normal, physically, I wouldn’t take it. Because I’ve gotten a view of life that very few will ever get. I’ve seen sides of people that few people will ever experience. I’ve seen the extreme hatred and cruelty and shallow nature so many display, but I’ve also seen the extraordinary kindness, strength, and compassion of others, and I get to go to sleep each night knowing that I’m surrounded by people that truly love me because of who I am and not what I look like, and it’s wonderful. It really is! I do not feel wrong. Most days I don’t even feel different.

In a world that has insisted on defining me by my disease and my appearance, I’ve never quite known what to do, because I’ve never identified with it. I’ve had dozens of surgeries, and still, I do not look like everyone else. I say this with my head held high, because I am proud. I am proud of who I am. I am proud of what I’ve been through. I am proud of the fact that I have learned to value my journey. And many people don’t quite understand the ways in which I say that I don’t identify with the very thing that has defined me, but I have Crouzon Syndrome. It does not have me.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

Originally published: June 20, 2016
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