Monday, February 11, 2013

Get Well Soon

     Today was one of those days that makes me wish I could just take a sleeping pill and wake up in a week. First of all, I totally deserve this flare. It is all my fault and I take complete responsibility for it. I haven't had my methotrexate since Christmas. That's like 6-7 weeks, people. But in the last 6-7 weeks, I have not once felt nauseous. My body has not felt absolutely disgusting and icky and I have not had to watch yellow liquid being injected into my poor, undeserving arm. In some ways, I've loved this past month-and-a-half. The joints, however, have not. As you may have guessed, my joints, being as outspoken as they are, have been rebelling.
     The second reason that I brought on this flare myself is that I overdid the weekend. I went shopping on Saturday, which was absolutely wonderful. I'm a tad bit in love with summery dresses and seeing all of the new ones just warmed my heart, haha (no worries, I only walked away with one). I was able to do all of my shopping without the use of my wheelchair (cue the applause). I went to all of my normal activities on Sunday plus an extra one.
     It was utterly exhausting. I don't know how it is possible for a thirteen year old to be so tired at the simplest things. Anyway, I pushed myself. I went to school this morning but had to text my dad to pick me up after only one class, because my knees were just screaming at me. Luckily, it was the heating blanket (when all the joints are hurting, you can't settle for a heating pad; you have to whip out the whole blanket) and my best dog-friend Bella to the rescue. Today has made me realize how much I truly despise being in pain.
    "Get well soon because your chronic debilitating illness is boring and becoming a major inconvenience for me."
      I saw this quote through an RA support groups I belong to, and I think I must've kissed the computer screen. I've never felt any more connection to a quote IN MY LIFE. First of all, I love the way it is phrased. It's sarcastic, but I'm pretty sure that it is exactly what a bazillion different people are thinking (even subconsciously). One thing people with chronic illnesses always say is that it separates your real friends from your fake friends. It's cliché, but it is true. People are always there for you at the beginning. Friends come up to you and say, "I'll be here for you no matter what." That statement has turned into something completely meaningless to me. So many people say that and then you never see them again.
      People help you in the beginning because it makes them feel good about themselves. Now, I understand that helping another person does feel good. But I've long said that Christians should not help other people because it feels good. What if helping other people felt awful (as it sometimes does)? Newsflash: We're still called to help them. The point of this is, that feeling good wears off very quickly. That's when people pack their bags and run.
      People also don't understand that chronic illness is forever (or at least for a prolonged period of time) in most cases. The pain doesn't just go away. You can't get used to it. Especially the chronic fatigue and exhaustion. Fatigue is by far the most frustrating thing I've ever had to deal with. My joints sometimes feel well enough to do something, but I'm just way too tired. I expect myself to be able to "suck it up" and move on and hold my eyelids open, but sometimes I physically cannot. That makes me feel unproductive.
      When you first get sick, everyone calls and texts and emails you. Of course, this is all well-meaning. You are dealing with absolute shock. But then, not-so-gradually, those helping hands fade away. The world keeps turning, but you are in the same place you started in. Your situation did not change. I would argue that you can never really overcome it mentally or emotionally, either. It's more like a cycle. You try to pick yourself up, but your bags are too heavy. At some point, you can't keep pretending. Those are the times when you accidentally go off on someone or become grumpy.
       But more days than not, we just plaster on a smile that never feels quite right. We pick up the phone and even though we've had a terrible day we use our most chipper voice. There is no choice given to us. We HAVE to do this. But we are not alone in this. A lot of the conversations I have with other kids, teens, and adults dealing with chronic illnesses revolve around losing friendships and feeling like we're living a sort of "fake" life.
       I understand that chronic illness is an inconvenience. Of course it is. I get that. It's an inconvenience for me, too. At the end of the day, it is no fun for anyone involved. I think about the baggage metaphor (the one I briefly mentioned a couple paragraphs up) a lot. I wonder if letting other people help me is like baggage; I can pass it to someone else for a moment and feel a bit of relief. I also wonder if it is more like a candle, where I can spread it by letting others help me but at the end of the day it leaves us all hurting and inconvenienced. I sometimes wonder how many times people say they want you to feel better just because they're tired of helping you. I think that number is higher than anyone would want to admit. It's just sad. We are still people, illness or not, and we are trying our best. We're not perfect.
       So if you ARE going to tell someone that you're there for them, or that you hope they feel better (I would definitely refrain from using the phrase "get well soon" to someone who is chronically sick), do it knowing what you are getting yourself into.



  1. Rachel, you write beautifully. I'm a journalist in the UK, with 20 years' experience. I'm working on an arthritis project for young people, and I'm looking for the community. I came across your blog and just have to leave a note to say your writing is so evocative, natural and engaging. I can't believe you're only 13. Keep going!

  2. You will get through this, darling, you will. It's Madeleine here, the adult in NYC with JRA. These last few days have been difficult for me owing to the weather in NYC. I am so affected by the weather.

    But remember what I wrote to you the first time I ventured upon your Blog; your illness does not define you. It is a part of you but it is not you, not all of you.

    I was diagnosed almost 50 years ago and I have led a very good life. I went to University, I married the love of my life and I have given birth to two wonderful children who are now adults.

    Go forward, dear heart, become a doctor. You really can do anything that you set your mind to do.

    Your friend in NYC-

  3. Hi Sarah and Madeleine,
    I know I am really late on responding to these comments, but I wanted to say thank you! Madeleine, I am continually inspired by your perservence!

    Your friend,


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