Christine Miserandino featured in Scleroderma Voice Magazine Summer Edition

 

It was an honor to be interviewed by Christina Relacion from the Scleroderma Foundation for their Summer edition of Scleroderma Voice magazine. It is a true testament to the fact that “The Spoon Theory” now has a much wider audience then just lupus patients as I originally thought. The chronically ill community as a whole has identified with the story. It is truly amazing how one little story could reach so many people. I am blessed.

Thank you to the Scleroderma Foundation for the opportunity, I think the article turned out great!

I have included it in PDF form here.

©2019butyoudontlooksick.com
  • Barb

    OOPS!! Should have said “take this not lying down” but either way IT REALLY MATTERS that you have had an amazing impact on all of us!!1

  • Barb

    Oh Christine, you can’t imagine how much you have helped me explain having several illnesses where not much shows on the outside but I am a mess on the inside.
    I am going to share The Spoon Theory with my family, friends and anyone who asks me “what wrong now!” People can be so cruel sometimes but I am grateful that there is someone else willing to take this lying down (well, maybe we can lie down but still do whatever it takes..lol!)
    Anyway, I wanted to know how you finally got the diagnosis of Scleroderma. I have most of the symptoms but the new rheumy said that they aren’t bad enough to diagnose me with it…HUH? I would love to know what blood tests and “visible symptoms” you had or a reference to a doctor who will listen. Thanks for doing what you do every day…you don’t reallize the impact you are having but it means so much!!! Remember that the next time you are really huring or feeling like it doesn’t matter….It REALLY Matters!!!!

  • Susie

    Fantastic! Now, Christine, PLEASE PLEASE PLEASE add a “Scleroderma Sucks” T-shirt to your store. If it even prompts ONE person to ask me “What is scleroderma?” when I wear it, it will help us with awareness of this disease that no one has ever even heard of… and most of the time, can’t even pronounce. Five years after diagnosis, and my poor 86 year old father STILL can’t say the word correctly. Though I reassure him all the time that my having scleroderma isn’t his fault (there could be a genetic component, but I figure that there’s no point in letting him know that), he is forever asking me “How did you get this ‘Sperma-derma” thing?” LOL At least I’ll give him credit for caring and for trying to understand. 🙂

  • ANTJE VANCE

    I am looking forward to this interview in the magazine. I have Systemic Scleroderma and several related illnesses. The “Spoon Theory” totally describes how I have to organize my days, so as not to pay the heavy price of overdoing it.
    People often tell me too how “good” I look, not realizing how horrible my body feels. My neighbors see me do a little weeding outside and take it as a sign that I am “doing great”, not realizing that every step, every weed, every bending-down movement takes such effort and elicits so much pain. It is my feeble attempt to still have a sense of being useful, keeping the illness-associated deep depression at bay, fighting to keep my dignity, stalling the stiffness that is consuming my body joint by joint.
    The “looking good” appearance is achieved by keeping myself up, by always dressing nicely in bright colors, by having a positive attitude and by my intense desire not to be a burden to anyone. My relationship with God is also a tremendous help in
    dealing with this monster. We paint a picture of Christ with our every day life and how we conduct ourselves in every situation.
    Having Jesus in my life is living a hope-filled life and therefore I am not down and out, but “UP AND IN”.
    God bless,
    Antje Vance