“What Do You Want the World to Know About MHE?”

August 3, 2015




In an interview, I was asked that question. Truthfully, it threw me through a loop, and days later…I still can’t get that question out of my mind.


If you were to ask me that when I was in my early teens, I would have said “nothing”, because I was trying to pretend I didn’t have a disability, thank you very much.


But now…now there are so many things I want the world to know about MHE. I want them to know that it’s hard, it really is. It’s hard to deal with chronic pain, and it’s hard to deal with the feeling of isolation that comes with a rare, vastly unknown disorder. The segregation you feel from everyone else, especially if you are the only one with it, is very depressing.

Even if you have family members who live with MHE too, it’s still hard because this is a disorder that most people have never heard of before. Chances are, the peers in your school or coworkers in your place of work haven’t heard of it and don’t understand why you’re given “special permissions” that they don’t have. It creates jealousy and conflict, because you don’t look the way that your “healthy” peers and coworkers picture a person with a disability looking.


I would want them to know just how scary describing this disorder to others really is. It’s like stripping bare before someone you’ve just met, without an ounce of liquor in your system. You are showing one of the most intimate parts of yourself with someone who probably doesn’t even know what your middle name is or what your favorite color is, and you’re explaining it because they asked. They asked because they noticed a bone growth or a misshapen limb or a scar. They asked because they’re curious.

And people are always curious, especially if you don’t wear multiple layers of clothes to hide your bumps and scars. Then you end up feeling like you are constantly explaining yourself and this disorder. You end up feeling as if you are constantly stripping before their eyes.

I, like a lot of other twenty-something’s, take great care in picking my outfits for events. When someone makes a comment like “what happened to your arm/leg?” it can feel…crippling. (Pun not intended).


I would want them to know that the surgeries never really get easier because it always a chancy game. Each time you go under the knife, you go with the knowledge that this surgery may possibly make things better, BUT…there is also the chance that it might not work at all. In fact, it might make things worse. No matter how many surgeries you have, you still have that moment of panic just before the anesthesiologist puts the mask over your nose and mouth, because you know when you wake up, you’ll have to deal with more pain management, discomfort, and the recovery period, which is almost never as quick as you want and need it to be.


I would want them to know that the pity when people hear how many surgeries you have had is overwhelming and almost suffocating. People are prideful, it’s in our human nature, and having other people pity is makes us feel bad. We don’t want to be pitied. We don’t want to be defined as just “that person with the weird bone thing.” We want to be acknowledged for more, because we are more.


Another thing that I would want the world to know to know is that despite the bad pain days and yes, the emotional and mental weight of it all…living a happy life is still possible. I would want them to know that we are more than our disability, that we are more than the number of operations we’ve had or the scars that mar our skin.


What about you? What would you want the world to know about MHE?

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Thank you to Nicole Wynn for designing our logos and contributing her original artwork to our website and our hand-outs.  Nicole is a talented graphic designer who just happens to be living with MHE... you can visit her website at nicolewynn.net

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