Helping others understand lupus

Christine Miserandino with one of her spoons from

Christine Miserandino with one of her spoons from a collection; she has had lupus since she was 15. (April 27, 2011) (Credit: Newsday / Alejandra Villa )

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On a fall night in 1997, Christine Miserandino, then a junior at Hofstra University in Hempstead, was at the Colony diner in East Meadow with her best friend for their usual late-night snack of French fries and gravy. As Miserandino took her lupus medication, her friend asked what it really felt like to be sick with the autoimmune disease.

Miserandino grabbed all the spoons on their table and about a dozen or so more from nearby tables. She handed the clanky bouquet of flatware to her friend and told her to count them and remember the amount because she'd need them to plan out her day. Miserandino then began to take spoons away from her friend one by one, explaining that she would lose one for each task she chose to do in a day, like taking too long to get out of bed in the morning, or deciding to wear a buttoned-down shirt despite her achy hands.

She continued to walk her friend through the rest of the day, hammering home the point that those with lupus are forced daily to make choices about how to use their time and energy.

"You never want to run low on spoons because you never know when you will truly need them," she told her friend.

And that's how Miserandino's "The Spoon Theory" was born. Soon afterward, she wrote an essay on the idea for a class at Hofstra. Since then, "The Spoon Theory" has become a focal piece on her website, butyoudontlooksick.com, where Miserandino, 33, also writes a blog. There is even a language translator feature for the theory in Spanish, French and Hebrew.

Miserandino, who began having lupus symptoms when she was 15, had to take a medical leave from the market research job she loved because she had started chemotherapy as part of her treatment regimen. But wearing a wig and morphing into a stay-at-home 20-something left her depressed, so Miserandino started writing about her experiences, and that was the start of her blog.

"I learned very early on that I controlled other people's perception of this disease," she said. "I would be in the hospital dancing with the IV stand. People would say to me, 'but you don't look sick.' I thought, 'Great, that's the look I was going for.' "

It's that proactive attitude translated into her writing that has helped gain Miserandino -- a member of the board of directors for the Lupus Alliance of America Long Island / Queens affiliate -- 12,000 subscribers to her electronic newsletter, almost 28,000 fans on Facebook, more than 4,000 followers on Twitter and numerous daily emails and posts on message boards from devoted 'spoonies.'

Fans said Miserandino's blog and website have helped them cut down on lupus-related explanations.

"The day I found The Spoon Theory I printed it out and started giving it to people who were new in my life," said Denise Cunningham, 36, of Oceanside, who has had lupus for more than nine years. "I even gave it to my boss as soon as I started working at my current job."

Stephanie Kennedy, who was diagnosed 10 years ago and is also senior editor of the website, feels similarly.

"If someone doesn't have it [chronic illness], they don't understand how you can look normal and be a mess inside," said Kennedy, 37, of Fayetteville, N.C. "What took five years to explain now took five minutes."

The theory Miserandino created has its fans, but so do the spoons. They've made their way from Miserandino's website into her Massapequa Park home. Her most-prized one is a 4-foot spoon in her home office. She got it in September from a young Virginia woman with Crohn's disease who had traveled to North Carolina to hear Miserandino speak.

"There's no textbook that tells you how to deal with the everyday trials," said Miserandino, adding that the worst part of the disease is having to say no. "That's why I'm the big mouth on the Internet writing about this stuff."

Facts on Lupus
"Patients can present in a variety of ways, with a somewhat insidious onset," said Richard Furie, chief of rheumatology at North Shore-Long Island Jewish Health Systems. "Flares are unpredictable. It's a chronic condition with a waxing and waning course."

1.5 million -- Americans with lupus

12-to-1 -- Ratio of women vs. men who have lupus

The most common form is Systemic Lupus Erythematosus (SLE), which causes inflammation of various parts of the body. Cutaneous Lupus Erythematosus is limited to the skin, and Drug-induced Lupus is caused by certain prescription drugs.

Symptoms can include fatigue, joint pain, fever, anemia, skin rashes, hair loss and seizures

May is Lupus Awareness month

Other resources: lupusli.org; lupus.org; thelupussupportnetwork.org; thelupusmagazine.com; cure4lupus.org

Source: Lupus Foundation

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