Sunday, June 23, 2013

Never Defined By Disease

      I'm the girl writing the angry blog post at midnight on my bed in my room. Honestly, I was about to go to bed. In fact, I want to go to bed. I don't even need to write this, as terrible as it sounds. I have an idea for another post separate from this one already, and I wrote a post yesterday that I was planning on publishing Monday. But for some reason, I get my best ideas late at night. Tonight is one of those nights.
      It really, really bothers me when people tell me that my JRA does not define me. I know that sounds very odd.* But hear me out. I never thought it defined me in the first place. In fact, I'm sure it doesn't. However, I think sometimes my JRA is all people see of me. Wrist splints and a slight limp can be the first thing people notice. But that doesn't mean it defines me, that means other people don't look past it.
      When people tell me that JRA does not define me, even when they're trying to be encouraging, it is somewhat offensive. It implies that I act like it does, or thought it did. I mean for goodness sake, half of the people who say that read this blog. Clearly they never read "Defined".
      Also, by saying, "Your juvenile arthritis does not define you," when we are not even talking about juvenile arthritis tells me that it does define me. What if the last thing someone told you was that your disease does not define you? Is that the last thing you would want to hear from that person? It obviously defines me if someone brings it up randomly! Was there really nothing better to say, nothing about who I am as a person and not as a disease?
      Additionally, no one ever tells you what does define you when they say that arthritis doesn't define you. If my arthritis doesn't define me, what does? Is it Jesus? Is it music? Is it writing? No one ever tells me. I want to know. If you don't think arthritis defines me, what do you think does? After all, what does define you is more important than what does not. If you look up a word in the dictionary, it doesn't tell you what it isn't. It tells you what it is. So if you are going to try to tell someone that they are not defined by their arthritis, you better be ready to tell them what they are defined by.
      I do not mean to be so angry. I just get really worked up. I'm truly infuriated right now, because I see this happen so much and I see so many broken hearts because of it.
      As with all things, there are exceptions to this. If someone says something along the lines of, "I am no greater than my disease,", then it is perfectly acceptable and even admirable to say, "Your disease does not define you." It is when it is random and spontaneous that it stings so badly.
      Writing this, I debate whether I bring on this "encouragement" myself. Do I focus too much on my arthritis? Should I even be writing this blog? Why not just keep to myself and pretend my pain doesn't exist? Why do I allow my phone to buzz with new emails, texts, tweets, and alerts relating to my arthritis? Why not block it all out? Am I shaping my identity around my arthritis?
     Personally, I think I should be able to keep a blog about juvenile rheumatoid arthritis without being told every five seconds that my arthritis does not define me. Because I know that, and I always have. I'm just scared that I'll let it, intentionally or unintentionally.


*As much as I hate it when people tell me that my JRA does not define me, it is NOT better to tell someone that their arthritis does define them. In fact, it's a million times worse. Luckily that has never happened to me.

1 comment:

  1. I don't know. Do you think my weight defines me? Because the other day someone told me I was grotesquely obese. He didn't mean it in a mean way, although it is hard to imagine any other way to mean that. I hope people can see beyond my weight, although it is clearly the first thing that they notice about me. And to be honest, although I don't think it defines me, it is part of the definition, part of what has made me who I am. I hope when people tell you arthritis doesn't define you, they mean it as a compliment. They know you are so much more than the kid with arthritis -- singer, songwriter, killer handbell player, student, Christian, excellent interpreter. All part of what makes you YOU. Rhonda W


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