The Spoon Lady

Christine Miserandino Created A Global Community For People With Chronic Illness. Now She’s The One Getting Support.

- Linda Childers

YOU CAN’T TELL BY LOOKING AT CHRISTINE MISERANDINO THAT SHE HAS A CHRONIC ILLNESS. As she drops her 10-year-old daughter, Olivia, at school, she looks like any other Long Island, New York, mom. Yet Christine can’t remember a time when she wasn’t in pain. When she was in her teens, Christine was diagnosed with systemic lupus erythematosus (lupus). But, she says, “lupus never comes to the party alone.” Recently, she’s also been dealing with Sjögren’s syndrome and a stroke – her second.

Because Christine is outgoing, charismatic and energetic when she’s feeling well, it can be hard to imagine that on many other days she’s just too exhausted and ill to get out of bed. For a while, even those who knew her well didn’t really understand what she was going through. That’s what led to the Spoon Theory and, ultimately, her identity as the Spoon Lady.

BIRTH OF THE SPOON THEORY

Nearly 20 years ago, when she was in college, Christine and her best friend were in a diner when her friend asked what it felt like to live with lupus. Christine grabbed a fistful of spoons and used them to represent the energy it takes to get through each day. She explained that while most people have plenty of “spoons,” those with chronic illness have limited energy, and each action costs them a spoon.

“I gave my friend 12 spoons and asked her to describe the events of a typical day,” Christine says. “As she rattled off her list of daily chores (brushing her teeth, making breakfast), I explained that each act would cost her a spoon. She was floored to find she only had six spoons left before she even left the house.”