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We Are Lupus Survivors, with Christine Miserandino

03/08/2011

  • Christine Miserandino:

    So, I have had lupus for 18 years. And I think I'm living a good life. And, how long have you?

  • Eric Calhoun:

    I've had lupus for 29 years now. And I think I'm doing great.

  • Christine:

    And what about you, Steph?

  • Stephanie Kennedy:

    I've had it 10 years, most of my adult life, I'll say. And it's been a roller coaster, I have to be honest.

  • Christine:

    And Kim?

  • Kim Schofield:

    Well, I'm in my 11th year. And I was diagnosed right in the prime of my career. I lost control of everything. I lost a lot of energy. I lost a lot of time, a lot of friends. I lost a career. But, you know what? I was still able to return to college and go on and get advanced degrees. But, it was a struggle.

  • Christine:

    Good for you.

  • Kim:

    Retaining and remembering, and the flares. But you know what? We're survivors.

  • Christine:

    We are.

  • Kim:

    We are survivors.

  • Eric:

    For me, it was my coping mechanism came in like phases. It didn't all happen overnight, because I was dealing with the facial part, losing my hair, my skin changed. And I had to, first of all, accept myself, accept the disease. And then the third phase came when I was hoping that someone would select me as their husband, as handsome as I am, as Kim has already stated. And so that happened. And once I began to accept my disease, accept my condition, accept the changes, and I found someone that would love me for me -- hey, my life began to change.

  • Stephanie:

    I think you hit the nail on the head, there. And it has been a journey for me in that I am not the same mother. I have three children. I did everything with my children. I went everywhere. We had tea parties, we had princess time, we dressed up. I took them to the mall. And then I got sick.

    And then my son came 10 years later. I had been sick already for seven years. And sometimes it hurts, because my son is 3-years-old, and my daughters are more of a mother to my child than I am. And that has been my biggest stumbling block in calling myself a survivor.

    I'm making them grow up way before their time, and way before they should. They should not be worried about fixing their brother dinner. They should be worried about playing with their friends.

  • Eric:

    Well, I think you should be proud of yourself, though. Because when you were well, you deposited into your daughters what a mother should be.

  • Christine:

    Yes.

  • Eric:

    And they are now being the mother for you, where mom can't be a mom.

  • Kim:

    We do the best we can with the situation that we're given. And the strength that we show them is an encouragement everyday that they can survive no matter what obstacles come their way. That there's still a strength, because they saw mom, they saw dad, they saw everyone go through this.

  • Christine:

    And you know, you make it work. You make it work. And what's amazing is that's how you survive, when you finally accept it. Come on, lupus. You're along for the ride! And let's find a new way.

    And, you know, I realized just now when I said 18 that I have actually been sick longer than I've been healthy. And that's sad. And that's miserable to think about. But then I turn it around, and I say “I'm good at this.”

  • Eric:

    Exactly.

  • Christine:

    I know how to do what I wanted to do, but switch it. Switch it up, adjust. I can be a survivor. And we can still live with lupus, and do it well.

  • Eric:

    You rise to the top. You overcome, you fight… because the moment that we succumb to this, the moment that we just roll over and just -- OK, I got lupus, and that's it. I don't have any more life. Life has dealt me these cards. Well, let's play the cards out, because there are some more cards in the deck, OK.

  • Kim:

    I kind of say, you know what? I have a story and my story is not just about lupus.

  • Eric:

    That’s right.

  • Kim:

    It doesn't define who we are. It just adds another element to make the story of our life better. Our life stories are better because of lupus.

  • Stephanie:

    The story of our life, I love that.

  • Christine:

    You know what I always say? Lupus made my body weaker, but my soul stronger. There we go.

  • Kim:

    Alright, I like that one.

  • Christine:

    Absolutely.

  • Kim:

    I like that one.

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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