My Experience

I'm Not Broken

I’m not broken. I have a chronic illness. I do things differently. I must accommodate my disability or risk having severe consequences. That doesn’t make me broken, it makes me human.
This topic has come up a few different times recently. I’ve addressed in blog articles the narrative that we set for ourselves. Today I’m talking about other’s narratives about me. I want to address this because much like my language matters, your language about me matters. I can’t change my disability. It is a part of me. When you say things like, “cause you’re broken.” It’s often very hurtful.

I do a lot to manage my disability. I often try to hide these techniques because of fear of scrutiny. When I can’t hide elements, it makes me feel vulnerable. Suddenly, you can see this thing that I can’t control. This part of my world that I often work very hard to shield others from. Let me clarify, I am not ashamed of my disability. It isn’t a weakness. I hide these things because of my personal comfort level. Some people I don’t hide these elements from, they see it all. The general population often doesn’t see it all though.

There are moments where I can’t hide it. Suddenly and with little warning, my symptoms and daily experience are out there for the world to see. I’ve heard from others that it can be jarring to watch. I do a decent job of pretending that my symptoms aren’t there. Crush makes it relatively easy. So when it all bubbles up, people aren’t prepared. I guess what I’d say to others is don’t make a joke out of it.

I know that it can be uncomfortable. I know that you probably don’t know what to say. My advice for anyone in that situation is be honest. Say that you want to support someone but you don’t know how. Say that you are having difficulties understanding what’s going on. Don’t make jokes about how someone with a disability is broken. It’s incredibly painful.

The difficult thing is that addressing this requires an intense amount of courage. Especially, when I didn’t intend for someone to see that side of me. Saying that someone said something to hurt your feelings is difficult. At least it’s difficult for me. When this is a repetitive occurrence after I have spoken about it before, that’s when I reevaluate who I want in my life. You don’t get to define me based on your discomfort. You don’t get to tell me what I am. You don’t know what it’s like to live in my body and take care of this body. You can only act based on what I share. If I share with you that something is hurtful and you continue to do it, that’s your problem not mine.

In summary, be kind. Don’t speak about someone’s disability in a derogatory manner. Not only is it rude but it’s hurtful. If you’re having trouble understanding something, ask questions. If you don’t know how to support someone, say that. Say “I want to support you, but I don’t know how.” It’s an uncomfortable dance for everyone but your words are important, so pick them wisely.

I hope your day is filled with joy, positivity, and laughter. I hope you find peace, love, and happiness.

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