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Living With Lupus

Christine Miserandino Founder, Writer, Patient Advocate


Bad Flare Day

Christine Miserandino  Founder, Writer, Patient Advocate
www.ButYouDontLookSick.com

Christine Miserandino was a dancer at the High School of Music & Art and the Performing Arts in NYC (the “Fame” high school) when she sensed there was something wrong with her health. “I kept getting hurt,” she remembers.  “How do you sprain your ankle ten times, and hurt your knee every week?”


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Doctors were baffled by her symptoms because of her young age and she was misdiagnosed numerous times before they concluded that she had lupus, a chronic, autoimmune disease that can damage any part of the body including your skin, joints and/or organs. It is a disease that flares up and the symptoms can range from mild to life-threatening.

“I was the only girl [we knew] who had it.  I had knee braces and walked with a cane at my Sweet 16,” she says.

Christine Miserandino

Christine Miserandino

Because of lupus, Christine was forced to stop dancing. As a student at Hofstra University, she excelled and was voted homecoming queen and the President of the Panhellenic Sorority. In the course of her studies at Hofstra, she was given an assignment to write an essay and as she says, “that’s where it all started.”

The inspiration for the essay was a conversation Christine had with one of her friends at a diner as she tried to describe what it’s like living with lupus. Frustrated trying to explain what she faces performing tasks that healthy people take for granted, Christine grabbed 12 teaspoons to illustrate how her illness forces her to make challenging choices every day. Together the friends played the spoon game, each spoon representing a routine activity during a typical day. As her friend handed back her first spoon for “getting ready for work” Christine realigned the parameters for the game and explained that things like “crawling out of bed”, “showering” and “getting dressed” counted as individual spoons.

At that moment “The Spoon Theory” was born. “With lupus, you don’t have the luxury of being thoughtless.” Christine explains. “You have to adjust for everything.” She describes how you can choose to cook dinner, but then might not have enough energy to clean the dishes; how you might be able to go out to dinner but not be able to drive home.

As I listened to Christine describe “The Spoon Theory,” I realized that she used a lot of spoons just to be with me. It was a humbling experience. She explained that she has learned to live her life holding a spoon “in reserve” and to always be prepared.

Christine sent the essay to Lupus Alliance which published the inspirational piece. She went on living with the ups and downs of lupus. She didn’t get to finish college. Christine was too busy being sick.

When her lupus went into remission, she began working as an event planner.  “I was so determined to be normal,” she says.  Sadly, she got very sick again and had swelling on her heart and lungs and lost all of her hair.  “I was 24 and I had to wear a wig to work,” she remembers.  “No one knew about lupus.  People asked me if I had chemo.  You feel like you’re the only one in the world.”

With this relapse, Christine became so ill she had to leave her job and give up her apartment.  “I had to move back home.  It was another blow to my soul,” she says.  Lupus had struck at every milestone in her life: in high school, college, at her job and now it threatened her independence.  “Lupus gets you when you’re in your twenties and thirties, when you’re building your dreams,” she said.

“Lupus is an evil, sneaky, snake of a disease. It comes, it attacks and it changes,” she says and added, “There hasn’t been a medical advancement in 50 years, not one new medicine has come along. People are getting diagnosed younger, and they’re treating you longer.  But everyone is treating the symptoms, not the disease.”

Christine was 25, single, sick, living at home and unable to work. “I was just a girl with a laptop,” she says modestly.  Her brother, Dominick, knew that Christine had a lot of essays and poetry compiled that she could share with others.  He bought her the domain name, www.butyoudontlooksick.com as an inside joke, because everyone always said that to Christine.

The site started with just one page and Christine kept adding content to the site. She blogged, wrote articles and added links and watched the traffic continue to grow.  She now has 5,000 people who opt-in for her weekly newsletter and 3,000 who use her message boards.  Her site has attracted many suffering with other chronic illnesses like fibromyalgia, multiple sclerosis and cystic fibrosis.

People have embraced Christine’s Spoon Theory as a way to explain to their families and friends about living with a chronic illness.  It has been published in more than 35 magazines and multiple medical newsletters around the world. “You know you’ve “made it” when someone forwards you your own link,” she says smiling.

According to Alexa, a traffic ranking website that provides free web traffic metrics, top site lists and site demographics, Butyoudontlooksick.com is the number one personal website for lupus in the world. It’s estimated that there are 5 million people who have a form of lupus and Christine can now expect more than 2 million hits when she uploads a new essay. She credits her husband, Frank, a Vice President of IT with a large Long Island bank, with her success for his help and support.

Christine’s face lights up when she talks about her two year old “miracle baby”, Olivia. “My first order of business is to be healthy so I can take care of my child,” she says. Five doctors advised Christine not to get pregnant and she ended up being hospitalized numerous times during her pregnancy. Olivia is healthy and happy, but Christine says, “One of my daughter’s first words was “medicine”. I know I wasn’t the only mom this happened to [who has lupus] and I want an answer. Christine is working on another essay titled, 6,783 Pills. “That’s about how many pills I think I’ve taken since being diagnosed,” she says.

“I am now 32 years old in ‘lupus land,’ as she calls it, “and I’m [known as] The Spoon Lady. I was a just girl with a laptop reaching out trying to make a difference.” Christine recently overheard Frank describing her progress to someone about how far she’s come: “She used to dance with her body and now she dances with her words.” Christine remembers this with a smile, adding, “I took a bad memory and twisted it into a good one.”

For more information go to www.ButYouDontLookSick.com or e-mail  Christine@ButYouDontLookSick.com

Read about The Spoon Theory at www.butyoudontlooksick.com/the_spoon_theory/

If you know a super woman who deserves good Fortune—and a profile—e-mail your nominations to Beverly at bfortune@longislandpress.com.

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