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Lupus Secret Language, with Christine Miserandino

03/08/2011

  • Christine Miserandino:

    How are you doing today there, Kim?

  • Kim Schofield:

    I'm good.

  • Christine:

    How are you doing?

  • Stephanie Kennedy:

    I'm fine.

  • Christine:

      I'm feeling fabulous. And that's what I said this morning when my husband called.

    “How you doing?”

    “Good! I'm feeling fine.”

    How are you really feeling?

  • Kim:

    Really… my legs hurt, my knees, my joints are hurting. I feel awful. But not everybody understands. By the time you get done explaining it, you're exhausted. And if you say the same thing over, and over, and over again, who wants to -- who really does want to hear it? So it's easier to just say, "I'm fine."

  • Stephanie

    It is.

  • Christine:

    "Fine. I'm doing good. I'm fine."

    And then I realized, when I'm saying, "I'm fine" to everyone, their "fine" is different than our "fine."

  • Kim:

    Right.

  • Stephanie

    Absolutely. What we feel and what we say is our own language.

  • Kim:

    Ah! It’s the lupus language. And I try to tell people, you know, have you ever had the flu? You know, when you feel achy, and you're tired, and you want to pull the covers all up over your head and just say, "Leave me alone"? Well, you know what? Your worst day is my best day. I feel like I have the flu every single day. But it doesn't get any better. No one explained that it would be this intense every day.

  • Christine:

    It's almost like the secret society of the sick. We know the code words. And I can look at you and go, "Nah, not doing good." But I feel like you'll understand that better than my friends.

  • Stephanie:

    You know, I don't think it's even limited to friends. Unfortunately, family members -- as much as they love you, and you love them, and they see you on a daily basis -- sometimes they don't even get it.

  • Christine:

    I was in college, and I was talking to my friend at the diner. And she said to me, you know, “What does it really feel like?” And I said to her, you know, “Here. Here's some spoons. (Holds up handful of spoons) Follow my day.”

    And she said, “Well you get up, and you go out.”

    And I'm like, “Whoa, whoa, whoa, whoa, whoa!"

    So come on girls. Wait… I get up, and I open up my eyes. I'm running late and I feel my body is in pain. (Throws down a spoon) Then I crawl out of bed. It's not like I "jump." It's I "crawl" out of bed. (Throws another spoon)

  • Kim:

    You have to decide what you can put on, because, exactly -- can I tie this morning? Can I button this morning?

  • Christine:

    Can I button the cardigan?

  • Kim:

    Can I zipper this morning? What can I do? (Throws down a spoon)

  • Christine:

    Oh, wait! We have to make something to eat. We can't skip breakfast.

  • Kim:

    No, no, no. Because you have to take your medication.

  • Christine:

    You have to take your medicine!

  • Kim:

    Right.

  • Stephanie:

    You wake up, and before you even open your eyes you know it's raining… (Throws down a spoon) Well, it's raining.

  • Christine:

    Wait, wait, wait.

  • Stephanie:

    You hadn't even seen the rain. But you know it's raining…

  • Kim:

    Yes. But you know the rain.

  • Stephanie:

    …because your body is telling you it's raining.

  • Christine:

    Cause I really -- if it's raining -- it's gone. Wait, let's -- it's gone. (Throws down two spoons)  

    I felt like these became my English to Lupus translator. Because all of a sudden, she realized, "Wait a minute. I wasn’t thinking about all these things."

    And when you say "fine", you don't mean "fine." And when you walk in looking cute, I'm not seeing the black and blues under your jeans.

  • Kim:

    And you're not seeing the energy that it takes me to complete a sentence, because in my mind I hear it, but I can't get it out. You're not seeing that.

  • Christine:

    That’s the beauty of it, too, that we get. That we can start our day with this (Holds up handful of spoons) . And you did a conference. And they're gone. (Takes all Kim’s spoons away and throws them down)

  • Kim:

    And I'm done. And there's some times when just a 15-minute nap will help me to get one spoon back. And that's all I have for the day.

  • Christine:

    Exactly.

  • Kim:

    And some days it's enough. But then there are those days, Christine, where it is just not enough. And I've given everything I can. And no one seems to understand what it's like to live with spoons.

  • Christine:

    I learned what was important. You know what? The dishes in the sink will be there. But tonight my daughter has a cough, and she needs me to take care of her. Tonight I want to be a mom. And tonight I want to be normal.

  • Kim:

    Yes.

  • Christine:

    I want to be normal. And you know what? Normal to everyone else is not normal to us.

  • Stephanie:

    We sat here and laughed because you're OK, and I'm fine, and you're great. And we know we're not. But you have to be honest with those around you, whether it's your family members, your friends, your coworkers. Because they don't know. They don't live our lives. They don't know when we say we're fine, that we're not.

  • Christine:

    They can't read our minds.

  • Kim:

    No.

  • Stephanie:

    Absolutely. So, I have learned that if I want people to understand, and kind of put their selves in my shoes, I have to be brutally honest sometimes about how I feel. And for me, that has been the hardest part of this journey that I have been on -- is putting myself out there and letting everyone know that I’m not fine, that I’m not OK.

  • Kim:

    Well, there is a good side, a bad side, and an ugly. (Laughter) When it’s good it's good. And when it's ugly it is (All said together) ug-ly! (Laughter)

    But the good thing about this is that you are able to express yourself and say, you know what, today is just not a good day. It's a loopy day.

    And so then I find that I start guarding my spoons (Gathering up spoons) , and taking them back. (Laughter) And then people will start trying to snatch them and I'm… No. No. This is all I have today. This is mine. This is our world. This is our world. It's not the end of the world. It's just the beginning of a new way of living.

  • Christine:

    Absolutely.

Guest Expert What is a guest expert?

Christine Miserandino is a lupus advocate who writes, blogs, and speaks about living with lupus.

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