Friday, January 18, 2013

Moving the Earth

      I don't know much.
      In the grand scheme of things, I'm not particularly smart. I don't have some broad range of knowledge that enables me to work out any life-problem in my head and I make the same mistakes twice. Nope, three times. Maybe more like a million.
      There are some things, however, that I DO know. One of those things is that I am most likely going to become a doctor. I want to reach the kids who are in places so low that they don't ever think they'll get out. I want to be the doctor who can take the child or teenager by the hand and say "I know how you feel" and mean it. I want to be the kind of doctor that patients boast about. I want to be the doctor who connects patients who have an interest in meeting others like themselves. I want to be the doctor who gives all of my teenage rheumatology patients my cell phone number so that they can text me or call me if they need me or if they're having a particularly hard day. I want to be the doctor who is also a friend and a confidant.
      If I'm going to be a doctor, I'm going to be a great doctor. I have a whole list sitting in my backpack of things I will do to achieve that goal. It's not even a goal as much as a requirement. I'm not going to be an average doctor. I'm just not. I'd rather just pick another profession.
      The concept of the chronic illness community used to really bother me. I was convinced that these bloggers, Facebook and Twitter pages, and advocates focused too much on their illness and not enough on the other parts of their life. If my timeline filled itself with posts about chronic disease, wouldn't it just make me think about my own problems and worries even more?
       I was wrong. When I was diagnosed I had so many questions. Instead of following helpful people on social media and reaching out to other people in the chronic illness community, I left myself wondering. That just made me think about my illness even more and worry about things even more. Luckily, it wasn't too long before I got myself connected and educated.
      My advice to anyone who is dealing with a chronic illness, specifically an autoimmune illness, is to reach out and allow yourself to be reached. You will meet people, whether at conferences or locally or online, who can help you. They have gone through your struggles and can answer your questions and give you advice. Then, you will meet people who you yourself can inspire and reach out to.
      There are lots of nice people all around you every day who are willing to support you and care for you. However, at least in my experience, no one can understand even a tenth of what another autoimmune buddy understands. If you tell a person without an autoimmune illness that you're in pain or that you're having a tough day, you get the whole "you annoy me so much" look or the "you poor thang" look. If you tell a person who lives with an autoimmune illness that you are in pain, you get a best friend to confide in.
      I think it's safe to say that the world itself is pretty darn advanced. We have computers, extravagant houses, complex government systems, etc. With the touch of a button your bread turns to toast. I can hit a key on a piano and, if I do it correctly, make a beautiful sound. So my question is this: why can't we figure out how to be healthy and get rid of disease? Honestly, it's ridiculous. I'm not saying that to be whiny or complain, but simply to put the issue into the light it deserves. There are so many sick people in the world. It's been a problem for all of time and will continue to be until drastic steps are taken.
     People who are chronically ill have higher rates of disability, depression, divorce, and suicide. Overall, they have a lower quality of life. According to the CDC, 7 out of 10 deaths in the USA can be blamed on chronic illness. What in the world are we doing? Why do we divert our attention from this problem just because it is ongoing and has no easy fix? That's why chronically ill people are depressed! Chronic diseases DON'T have an easy fix, and nothing is going to happen overnight, but we need more goals. We need more healthy people. We don't need more people who have to sit out when their best friends are playing games because they have joints that cannot be healed. We don't need athletes being forced to give up dreams because their hearts have abnormalities and will not be able to support them. We don't need children being left without parents and parents having their children ripped away from them.
     We need advocacy. Not because we are not strong, or because we are whiny. We need advocacy because disease is wrong, and things can be done. Steps can be taken.
      I don't want to discredit all that has already been done, either. Biologics are a recent advancement in the medical world, and I'm beyond grateful for being able to access Enbrel. Methotrexate is amazing, but I truly believe that we can find better alternatives. Without advanced medical testing I might not even have a diagnosis. Maybe I'm just a hopeless idealist with no sense of how big and complicated the world is, but maybe that's what we need. Maybe we need more people who are willing to just go for it.
      I refuse to be the chronic illness patient who sits in bed all day, doing nothing, being a hermit. I will share my story because I believe that the world benefits from the exchange of experience. I am not going to be the girl who sits back and watches the world move before my eyes. I'm going to go in and move it in the direction I want. I believe that if we put importance on the things that are truly crucial then we can rise to the top.
      I'm not angry with the world, or typing this out with flaming fingertips. I think the world is simply lovely. I'm just trying to add to the beauty.

Love,
Rachel

1 comment:

  1. Many times it happens like that the child is suffering with JRA or juvenile rheumatoid arthritis, the parents find it very late. Till then the child had to go through the irresistible pain. It's good to hear that you want to do something for the kids with JRA.

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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!