She never looked sick
By:vBrian Zanzonico February 17, 2005
In her mid-20s, she had running shoes dyed the same color as her gown so she could dance in relative comfort at her brother’s wedding. She wound up in the hospital a week later, but for one night she was in charge of her body instead of the other way around.
Now 27, Miserandino has suffered from lupus, a chronic inflammatory disease that affects the body’s immune system as well as various parts of the body, including skin, joints, blood and kidneys, for more than half her life.
She was a healthy 14-year-old, a starry-eyed girl with designs on one day dancing on the Great White Way. Classically trained and studying at the renowned High School of Performing Arts in New York City, Miserandino was well on her way to fulfilling her dream. Then she began feeling pain in her legs, which isn’t out of the ordinary for someone who puts a tremendous amount of strain on her lower extremities.
The pain grew so great that she started having trouble walking. Next, Miserandino found that the simplest tasks exhausted her.
“There were so many misdiagnoses,” she recalled. “You have chronic fatigue, you have Epstein Barr. I was told it was growing pains. My mother was even told I was doing this because I wanted attention.”
Doctors said the pain in her joints could be arthritis, or rheumatoid arthritis, but how could they explain why all Miserandino wanted to do on a trip with her family to Disney World was nap? She was always tired. It had to be a thyroid condition, physicians concluded.
For years doctors bandied about the possibility of lupus, but were hesitant to make a judgment. “A lot of doctors are leery to make the diagnosis because many are either unaware of lupus or [thinking] that it could be so many other things,” she said.
With her hopes of appearing on Broadway dashed, Miserandino attended Hofstra to studying marketing. As a freshman, on a visit to the Mayo Clinic years after she first began experiencing the symptoms, she was officially diagnosed with lupus.
“People don’t take the words ‘tired’ or ‘pain’ for real,” she said. “They don’t give it validity. It is absolute exhaustion. If there’s a fire in my building, I don’t think I can get out. That’s the only way I could explain it to doctors and the only way I could get my friends to understand.”
She enjoyed much of her college experience, joining the Phi Sigma Sigma sorority, becoming a resident assistant and a finalist for Homecoming Queen. But she had to work twice as hard as her peers to both combat fatigue and keep up with her studies.
Her disease affected her social life at Hofstra. At week’s end, when many college students look to blow off steam, Miserandino didn’t have the strength to participate. Even if she did muster the energy to force herself to go out, she’d sip club soda all night. When people would ask what she was drinking, and she explained why it wasn’t alcoholic, she always received the same response: But you don’t look sick. With good wigs and makeup, which made her seem less pale after her medical treatments, Miserandino was every bit the easy-on-the-eyes coed.
But inside, lupus was overpowering her vital organs. She was in and out of the hospital most of her college career, though her gregarious personality and good grades earned her a job with a Long Island marketing firm. When the disease attacked her lungs and heart, Miserandino was forced to quit her job and leave school to endure a lengthy hospital stay.
Today, because of her exhaustion, she cannot hold a full-time job. She was taking as many as 12 pills a day last year, though she is now down to four a day.
But what she can’t do in an office, she makes up for in her Valley Stream home, with a Web site that she said offers lupus sufferers support and hope.
Two years ago, Christine’s brother, Dominick, the executive editor of TheCelebrityCafe.com, bought her the domain name that she heard so often: butyoudontlooksick.com. At the time it was an admittedly amateurish site with no links, and at first Miserandino received about 25 hits a month. It took some time, but she taught herself how to design and maintain the site.
She added some graphics, personal stories and “The Spoon Theory,” an essay she wrote about how lupus sufferers have limited energy with which to carry out even the most basic tasks. The concept of “The Spoon Theory,” is that people afflicted with lupus get only 12 spoons a day. Every time she does something, such as getting dressed or taking a shower, it depletes a spoon. By the end of the day, she may only have a spoon or two left. She may have to decide among cleaning her apartment, making dinner or hanging out with a friend because she can’t do it all without borrowing from tomorrow. If she borrows a spoon from tomorrow, tomorrow will be that much harder.
“I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing,” she wrote. “When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count ‘spoons’.”
Miserandino’s essay has become so popular in lupus circles that she often receives e-mails from people hoping to hear from the “Spoon Lady.” Her Web site now gets 1.5 million hits a month, and she has more than a dozen links to lupus and medical Web sites available.
Lupus is, as Miserandino says, a little-known, faceless disease. Her lot in life, she said, is to become the face of lupus and bring awareness to an illness that claims between 5,000 and 10,000 lives a year – mostly women of childbearing age.
“For a very long time, you question why it happens to you, but now I see this as a blessing,” she said, noting that her family and boyfriend have kept her in high spirits. “I think I learned important life lessons at a young age. Don’t sweat the small stuff. Value friends and family. I had to grow up fast. Now, with the Web site, I have touched people’s lives in a way no physician’s desk-reference book could.”