Living With Lupus, A Young Woman’s Journey
by Naomi Serviss, Long Island Woman Magazine May 2004
Christine Miserandino has loved to dance and entertain ever since she can remember. The 26-year-old Valley Stream resident recalled in a recent interview that her earliest childhood memories always centered on her becoming a dancer on Broadway.
Music, theater, dance – that was her world from her first after-school dance class to high school. She’d perform, smiling and pleasing audiences large and small, whether a couch full of family or an auditorium full of beaming parents. And she was blessed with enough razzle-dazzle talent and academic acumen to get accepted into New York City’s prestigious High School of Performing Arts. Then her dance world dreams began to crumble. Slowly. Painfully. Miserandino started noticing the little things at first – a twinge here, an ache there. Nothing out of the ordinary for dance students used to exercising, rigorous physical training and endless repetition. Who didn’t spend time complaining about a sprain, an ache, a pulled muscle? Went with the territory, she said.
“I started getting sicker when I was 14,” the soft-spoken Long Islander recalled. “I was getting a lot of joint pain in the leg and was tired a lot and I wanted to blame it on the dance,” she laughed. But her parents were unconvinced their daughter’s aches were of the usual variety or even inconsequential, and a series of doctor’s visits were subsequently arranged. Unfortunately, trip after trip to endless waiting rooms of specialists proved fruitless, and her family’s fears heightened. This once energetic, cheerful daughter who would just as soon pirouette across the room than walk had turned into a chronically exhausted, pained young adolescent. “I had to leave the high school,” she said, an act that nearly broke her heart and spirit. “I just couldn’t perform those skills at that time anymore.” I think we went to every single doctor in New York,” she joked. And not one could put the puzzle pieces together. Her symptoms increased from primarily joint pain, to chronic fatigue and near inability to move freely.
As her health deteriorated, with no diagnosis to at least focus on and treat, the family decided to visit the famed Mayo Clinic. It was there a name was finally put together with the chronically painful condition: Lupus. The diagnosis came as a surprise, but at least it was something tangible, something to research and understand, Miserandino explained.
A chronic inflammatory disease, lupus can affect numerous parts of the body, particularly the skin, joints, blood and kidney. Although lupus is often thought of as an older woman’s disease, it can occur at any age to either gender. It does occur 10 to 15 times more frequently among adult females, however, and whenever it strikes, the symptoms are generally the same. For most people, lupus is a mild disease that affects only a few organs. For others, it may cause more serious problems. More than 16,000 Americans develop lupus each year.
Miserandino may have been dealt an unexpected card, but rather than fall into despair, she reinvented her own deck. “Once they diagnosed me, I had a very good time for a few years,” she said of her health. “1 wasn’t in as much pain and I was determined to get my degree from the Performing Arts High School.” So much so, that she petitioned the school to allow her to make up her own education program.
“Instead of dancing, I became a stage manager, a back stage production person. I spent four periods a day with the theater technical director and I got an internship at Lincoln Center,” she reported proudly. Then she was accepted into a program at Hofstra University, where she studied marketing. That was a wonderful experience and I met so many fantastic people there,” she said. Students were happy to assist any way possible, taking notes, helping her around campus when needed, and Miserandino quickly became a popular campus figure. After graduating she landed a full-time job as a marketing and event planner and made a success of that as well.
Then her symptoms returned with a vengeance. “I had to take a medical leave and I had heart and lung involvement with the condition,” she added. She may have given up her day job outside her home, but in typical spirit, turned her experience into a positive. Miserandino, a gifted journal writer, penned a story, “The Spoon Theory,” which uses the utensil as a parable for life. The theory is based on having a set amount of “spoons” each day, and learning the best way to “spend” them in order to live a quality life.
Her brother Dominick constructed a website for her as a birthday gift last year and almost overnight, a new career was born. Her site focuses on living with Lupus as well as other “invisible” dieases and chronic illnesses. Its positive approach to living, humorous essays and uplifting stories have attracted an increasingly large following both locally and internationally. This past January, Miserandino was featured on a channel 13 program about keeping kids healthy.
Miserandino, is working on a book, But You Don’t Look Sick, the typical response people had upon learning of her illness. Now her time is spent tending to her website, answering the scores of supportive e-mails she receives each day and being an unofficial patient advocate. She also helps support the annual “Walk Along for Lupus” fundraising event for the Long Island/Queens chapter of the Lupus Alliance of America. This year’s walk is planned for October 17, at Eisenhower Park.
“Some days I have a million spoons and can do everything,” she said referring to her parable. “I hate the word ‘exhausted,’ but if there was a fire in the building, you’d get out of bed. I don’t know if I could,” she explained. When she’s feeling well and ventures out, she sometimes gets dirty looks when she parks in handicap spaces. “Do they see my heart? Do they see my lungs? One time an older woman said to me, “You in the cute jeans, missy, you have no respect.” I just kept quiet because the thought of fighting with this woman was exhausting,” she remembered.
Some days she wants to just stay in bed and not even deal with the pain, she said. “It would be easy to curl up in a ball and let the pain take over. But I say “No!” I have a new puppy, Sparky who needs me,” she laughed. Not to mention an adoring family and newfound friends from all over the world.