Christine Miserandino Founder, Writer, Patient Advocate

This is the site that started it all for me. I was thrilled when I discovered it because it was all about lupus all of the time. The Spoon Theory also won me over because I could not think of a good way to explain what I’ve been experiencing my entire life. It was perfect.

Christine Miserandino is founder of the website www.ButYouDontLookSick.com and the Long Island Press interviewed her in an article on Living With Lupus.

Miserandino was a dancer at the High School of Music & Art and the Performing Arts in NYC when she began having lupus symptoms. “I kept getting hurt,” she remembers. “How do you sprain your ankle ten times, and hurt your knee every week?” Later, while attending Hofstra University, she had to drop out of school because she “was too busy being sick”

When her lupus went into remission, she began work as an event planner. “I was so determined to be normal,” she says. Unfortunately, lupus entered her life again and got very sick with swelling on her heart and lungs and she 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.”

“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.”

The Spoon Theory was born while she was in college. “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.

The site is filled with information and personal stories and there is hope. Today Miserandino is 32, has a child and is married. Her site, 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.”