No, My Illness Is Not 'Cool'
We’ve all had that conversation. When someone new is around when you’re putting on your supportive braces and they say the dreaded, “Oh no, what happened?” They just don’t know how loaded that question is. You consider for a moment being brutally honest, “I don’t know… it just happened.” But you don’t want to confuse them, so you go for something a little lighter, “Oh, I need to wear it because I have a medical condition.”
You don’t want to have to explain to them that you really don’t know why it hurts or why your hands or feet just don’t work sometimes. You don’t want to get into it, you just wanted to sit in class and learn. But here they are, intrigued by something unfamiliar, and so, another loaded question comes flying your way, “Oh, well what do you have?”
Again, you don’t know how to respond. How do you say it? Do you tell this stranger you have been fighting this battle for over a year with many supposed diagnoses that led to medications that never worked? Do you tell them that you have had nearly 20 doctor’s visits in the past eight months? How do you tell them about the way that your physical pain can often cause so much mental and emotional pain as well? How do you explain to them that as much as you are willing to talk about your illness, you don’t want to do it all the time, so that instead of seeing you, they see your illness? How do you tell them about the perpetual distress of a person living their life with undiagnosed pain? How do you do all of this in the minute and a half remaining before the professor dims the lights and begins their lecture?
The truth is, you can’t. There is no way to simplify your illness enough that they will understand in that first-ever interaction with them. There is no way to demonstrate the difficulty of many simple activities. And so, you just give the quick, hopefully topic ending statement of, “I have a joint disorder” or maybe if you’re brave, saying what is more true, “Uh, they don’t really know yet.”
But then the ball is back in their court. They can let it drop or they can let it continue, or they can do something even worse, they could respond with, “Oh, that’s so cool! I’ve never known someone who has something like that.”
You know they say this because they have no idea what daily struggles you face, so you smile and nod as the professor finally begins to dim the lights and the rest of the room begins to quiet. But inside, you are still hearing the words, “Oh, that’s so cool!” You’re still pondering those four words, thinking to yourself, “My condition is a mystery, that’s intriguing, I suppose. I do often describe my life as ‘interesting’ when I don’t know how to respond to people’s questions. But is it cool?” No. It is not cool. It is difficult. It is strange. It challenges me every day. It makes me stronger. It makes me humble. But does it make me cool?
No. I believe it does not make me “cool” because it should not be the only thing that makes me fascinating. It should not be the only thing that you know about me. It has made me who I am but it is not the only thing that defines me.
Next class, I’m going to put my braces on before I go.
We want to hear your story. Become a Mighty contributor here.
Thinkstock photo by amoklv