About Christine Miserandino

 

 

 

Christine Miserandino is an award-winning writer, blogger, speaker and lupus patient advocate. Her writing about lupus and her “Spoon Theory” of communicating about chronic illness has been featured in numerous newspapers, magazines, medical newsletters and television media around the world, as well as on her website ButYouDontLookSick.com. Long Island Business News recognized Christine as a “Volunteer Healthcare Hero” and NY Newsday featured her as “one to watch” on Twitter as well as highlighting Christine in a full page spotlight on her work in the lupus community on Long Island and online. She has been a keynote speaker for many health organizations around the country as well as lead workshops and spoken on health related panels. She has also worked with pharmaceutical and marketing companies as a consultant representing a patients perspective. Ms. Miserandino is a guest expert on WebMD.com’s Lupus Community. She had the honor of being the host on WebMD.com’s video series called “Speaking of Lupus”

 

Christine is currently a member of the board of directors for the Lupus Alliance of America (National) as well as the Lupus Alliance of America Long Island/Queens Affiliate. She is also a member of the Society for Participatory Medicine, which supports numerous activities to help promote participatory medicine and the e-patient movement. The Society aims to advance the understanding of physicians and other professionals in the importance of well-informed, empowered and engaged patients making informed decisions about their care and treatment. This mission statement aligns with Christine’s views and passion. Christine is quoted and is listed as a reference in many books including CNN’s Elizabeth Cohen’s “The Empowered Patient”

 

From the age of fifteen, Christine Miserandino has been diagnosed with a myriad of illnesses from Chronic Fatigue Syndrome to Epstein Barr, and finally, many years later to a determination of Lupus. As though battling a shopping list of symptoms, Christine has consistently been told, by both well-wishers and doctors alike, “But you don’t look sick.” as if that was some kind of compensation for being chronically ill. Many times, being pretty or not sickly looking, made it harder to validate an illness you cannot see.  

 

Christine started out life with dreams of being a dancer on Broadway. She was classically trained for years and studied at The High School of Performing Arts inNew York City. She enjoyed acting, modeling and dancing. Just when a dancing career was on the brink, she was told that dancing would not be a good career choice for someone with joint pain. Christine studied atHofstraUniversity. It was there that she first discovered writing about her broad range of feelings, gave her a needed outlet and a voice to her pain. She switched her creative focus from theatre and dance and found a new focus in marketing. During her years atHofstraUniversity, she was a resident assistant, an active member of her sorority Phi Sigma Sigma, and she was a Homecoming Queen finalist. Although she had a full collegiate career, she had to spend most nights in bed, instead of at parties. She had to work twice as hard to get half the results of her peers in classes, because she was in pain or was exhausted and found it hard to concentrate.

 

 Unfortunately, her limitless career was cut short due to complications with her illness. She was forced to leave school because a flare with Lupus was out of control. Plagued with heart and breathing problems, as well as pain and debilitating fatigue, Christine was left with no other choice but to take a medical leave from both school and her job. While most young adults are concentrating on their future careers, salaries, or a love life, Christine was worrying about medications, hospital stays and how to pay her bills. 

 

Because Christine has lived with lupus for over 18 years she is dedicated to helping those with Lupus through her writing, speaking, volunteering, and work as a patient advocate. Christine with her family and friends has been  the top fundraising team for most of the Lupus Walks. They take pride in trying to raise more funds then the year before. This year she has raised over $11,000. Unfortunatly, it seems Lupus never comes alone and since her initial diagnosis, has also been diagnosed with fibromyalgia, Sjögren’s syndrome, Raynaud’s disease and neuropathy. When not advocating for lupus awareness; Christine loves spending time with her daughter Olivia and her family.

 

 

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 To contact Christine please click here. Please note that Christine recieves a tremendous amount of email a day, so if you are trying to contact her for a possible speaking engagement, product reviews, advertising, or other assignment please be specific in the subject line. Thank you.

 

 

  • louise

    Just wanted to say that you’re Spoon Theory is just magic and probably saved my life. Thank you !

  • savoyshopper

    I just wanted to say as someone else who suffers from an “invisible illness”, I’ve always loved the name of this page. Best wishes in your health and journey.

  • Grace

    I hope you find some time to look in to Lugol’s solution (Iodine and iodide) and hydrogen peroxide to cure yourself. Coping with illness is one thing, curing it is another. I hope you do it. 🙂

  • DavidRockies

    I’m hoping that others will take the time to read and share my story. It’s a cautionary tale, and reminds us of how important websites like Christine’s really are.

    Because of my ‘invisible disability,’ and a group of people who convinced the Fort Collins, Colorado authorities that there was nothing medically wrong with me, I have lost absolutely everything.

    http://nbeener.blogspot.com/2014/11/the-destruction-of-medically-disabled.html

  • Shireen Gonzaga

    Christine, you are doing extraordinary work on behalf of people with chronic illness. Like me. THANK YOU.

  • Christine-
    I have Lupus as well as other illnesses and your spoon theory was just such a blessing, and now spoons are a code word in our house! I have a blog, and was wondering if I could have your permission to post the spoon story, of course linking to you and your website. Thanks again.

  • Mary

    Thanks Christine-

    I’ve been super active most of my life but about 12 had a bout of mono. I was sick for 6 months and just recuperating when I ended up with breast cancer, then sepsis. It was one thing after another and when I finally thought I was done with all that I had a recurrence of the “mono”. Turns out I have have chronic EBV.
    I’m 51 but look 40, I keep myself fit with yoga, walking, running, hiking, whatever I can do. But then EBV hits and I can’t even lift my hand to drink a cup of tea. I spend weeks in bed, depressed, and in pain. Because I look like I do it’s hard for people to wrap their heads around the fact that I am sick.
    Thank you for coming up with this simple but effective way to explain to folks how it feels to have a chronic illness.

  • Jaye Clarke

    Hi Christine, I have only just been introduced to your site and to the “Spoon Theory” via another MS blogger.  I have PPMS and have tried to describe the fatigue and the symptoms that currently accompany this fatigue as having $10.00 a day.  Your analogy as well as your ability to communicate and advocate for those of us that “don’t look sick” yet have chronic degenerating illnesses is such an encouragement.  I am still wrestling with my own conflict between how I feel and the reality of my disease with my own perceptions about my not “looking” sick! So what chance is there that the greater community, who are not engaged in battle with conditions such as MS, Lupus or various others, can totally comprehend what I myself, who has such a disease, still struggle with? Thank you for not only creating an awareness of and educating the public with regards to this subject but also for the ability it has now given me to finally stop feeling so guilty for not outwardly appearing to feel what inwardly I actually feel.  Thank you http://primaryprogressivems.blogspot.com.au

  • I have your laundry list of problems topped off with a good does of hypermoblity which causes my joints to dislocate when ever they feel like it. Every single time I read your spoon theory I cry like a freaking baby! I made a picture recently that is a combination of your spoon as well as a mix of other things. Any way I hope you like it !   http://img600.imageshack.us/img600/1234/lupusspoondonelarge.jpg

  • do you accept health articles for your site

  • Jill

    Hi Christine, I’ve just read The Spoon Theory and its brought me to tears. I’m 28 with arthritis, fibromyalgia and psoriasis. I’ve been living in my own world of hell for yrs and until today I never knew how to explain how it feels to be constantly tired and demorilised by life. I have daily arguements with my family who admit they dont understand how I feel, but they also never ask. Now I will show them your site and they can read the spoon theory, and hopefully we can get past this communication breakdown and move forward.
    Thankyou for the words, that I’ve not been able to find myself
    Jill xx

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  • It took me almost 10 years to get a Celiac disease diagnosis, and – especially being a high schooler/college student in the first two years of my new lifestyle, a lot of my friends don’t fully understand that I am sick, too. I actually had a friend, who had known me for nearly a year and knew about Celiac, say, “Well, ideally you should have no gluten, right? But realistically, how much can you have?” He was astonished when I said, “Um, none at all, actually.” It took about seven months for even my parents to understand that just because I look okay now doesn’t mean I’m fully healthy. I also have been diagnosed pre-diabetec and hypothyroid (which, I theorize, could be related to the Celiac). All these things do make it harder to go out and do normal things – outings and vacations with my family are a pain, and for school trips, I’ve had to pack my own huge ice chest of food, then field questions about my weird looking sandwich when everyone else is eating spaghetti.

    I really liked the Spoon Theory article, and I feel like it was a great way to let others at least semi-grasp the idea of what it means to be dealing with these issues. I am studying to be a doctor, and hopefully when the time finally gets here, I can help spread awareness of issues like these.

    🙂

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