Thursday, December 6, 2012

Break The Rules

     The more I think about it, the more I think that "Don't Speak" was a bad post. However, I still think that it's accurate. I'm still going to leave it up, I'm still going to refer back to it, and I'm still going to be okay with it. But I want to use this post to dive a little deeper into it. Hopefully this will bring about more understanding. Please go ahead and accept that this is going to be a perfectly honest post, whether you like it or not.
     I have a theory that the title of "Don't Speak" has been taken very literally by many. Sometimes people just don't say anything because they don't know what to say. I understand that. But I think that sometimes people don't say anything because they're afraid they will say the wrong thing.
    To be honest, sometimes you are going to say the wrong thing. Sometimes you're going to be talking to me and I'm just going to be thinking to myself "stupid, stupid, stupid" or "are you seriously saying that" or "haven't you learned anything". I do appreciate the effort though, believe it or not. I am level-headed enough to comprehend that you are trying, and that you're giving it your all. So please, just say something. You don't have to be generic either. Just say things that you mean. I would hate to think that I missed out on a piece of insight by writing a judgmental post.
    As people with arthritis, we need to understand that others don't understand. How could we expect them to? Also, we have no right to lash out at others when they do say something stupid. We simply keep our grace, educate, and forgive. There is no need for harsh words or a long lecture. This is something that I would say that I do well. I do not get overly angry, I just get a little aggravated. For example, here is a typical conversation:
    Me: "My knee hurts because I have arthritis."
    Other Person: "Really? I think I have that too, my hands hurt when I write."
    Me: "Actually, that's a little different. I have polyarticular juvenile rheumatoid (or idiopathic) arthritis. It's an autoimmune disease."
    There is no point in being like "actually you have no idea what you're talking about" or "would you just shut up already because you don't get it". Grace. Class. Patience. We deal with arthritis; we can deal with other people. We do not raise our voices or lose our dignity. We press on with that much more gentleness. We are sick, but we will not let our sickness affect others. Perhaps that is one of the most important things to think about. We will not let our sickness affect others. 
    I'll be the first to admit that I'm not the nicest person when I'm in pain. However, pain is never an excuse for lashing out at someone. Pain shortens my temper, rips away my sense of humor, and shatters my happiness. Pain is no fun. But everyone has struggles, and if everyone lashed out, the world would be a very sorrowful place.
    I've heard everything on the "Do Speak" list before. That's why it's on there. There is really no need for everything to be repeated unless it is truly meant (though I suppose it could be helpful if dealing with someone who is newly diagnosed). Before you want to talk to someone with a chronic illness, you have to accept a crucial fact:

There is nothing you can say that will fill the void in a sick kid's life.

     No matter how hard you try, your empathy or comforting words can never balance out the pain. Broken relationships can be repaired with enough effort, time, and commitment. Mistakes can be forgiven, because God is just good like that. Most stress can be talked through and resolved. But words cannot fix a body that is constantly attacking itself.
     I'm now officially recommending that everyone stop trying to follow the rules and start following what they feel. Of course, you should probably still keep in mind what could be idiotic. But remember, every person that I've spent a decent amount of time with has said something stupid about my arthritis, something that did not help me at all, something that made me really question how clear I was being. Get over it. I'm not keeping a tally here, or replaying every little dumb comment in my head. Believe it or not, I have better things to do with my time.
     You can't be there for someone if you don't speak up out of fear of saying the wrong thing. If you really know someone well enough to the point where you're having a conversation about their arthritis with them, you ought to at least say what you're truly thinking and stop going over the mental checklist. You are not a robot.
     It is okay to mess up. People mess up all the time. Us JA kids are not expecting perfection out of everyone. We simply desire sensitivity and a genuine effort. It is exceedingly tough to talk to someone about arthritis who never brings up the arthritis themselves. No sick kid/teen wants to introduce such a painful and upsetting topic. Chronic illness patients just need someone to say something.
     In an email from one of my arthritis friends, Corrine, she wrote, "The best people don't wait for you to run to them, they run to you knowing that you need them."*

Love,
Rachel


*Thank you for letting me quote you, Corrine.

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Feel free to comment or shoot me an email - thekidwitharthritis@gmail.com I'll try to get back to you either way!