‘But you don’t look sick’
Valley Stream woman takes steps to increase the public’s awareness of lupus
By:Nicole Falco February 19, 2004
The alarm clock’s ringing. It’s much too early to rise, and she didn’t sleep well last night. Before she opens her eyes, Christine Miserandino begins to calculate the effect of every move she makes, and that means every move, including getting out of bed.
She walks to the kitchen to make herself something to eat for breakfast. Without breakfast she can-t take her medication and she has to take her medication otherwise she might as well have stayed in bed. She’s got to shower. Should she wash her hair today or shave her legs or both. She brushes her teeth. She combs her hair.
She gets dressed. What should she wear? Do her hands hurt? If they do, a button-down is out of the question. Is she running a fever? If so, she’ll need a sweater. If her arms are bruised or a rash has developed, she may decide on long sleeves.
She-s made it through the first two hours of her day. She hasn’t even left her house yet, but accomplishing those everyday tasks that most people take for granted could have absorbed half her energy for that day.
Miserandino, 26, of Valley Stream, uses spoons and the typical morning described above to help her friends, family and anyone else who doesn’t know what its like to live with lupus, understand why she doesn’t have the luxury of auto pilot. Lupus is her pilot. In an essay, The Spoon Theory, Miserandino explains that spoons represent the amount of energy she has to complete each day say 12 spoons. Every time she does something, such as getting dressed or taking a shower, she depletes a spoon. By the end of the day, she may only have a spoon or two left. She may have to decide between 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.
The complete Spoon Theory is posted on her Website at www.butyoudontlooksick.com. Her brother, Dominick, bought her the domain name for her birthday last summer. She created the Website herself, using Frontpage software. On the site, she introduces herself, explains what lupus is, offers resources and tips for those with lupus and their families, and provides links to related sites.
On her Website, Miserandino writes that lupus is 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. More than 16,000 new cases of lupus are diagnosed each year, and as many as 1.5 million Americans may have it. Symptoms include achy and swollen joints, skin rashes, prolonged or extreme fatigue, skin rashes, arthritis, sun sensitivity, anemia and hair loss. The disease can be mild in some patients or can cause life-threatening problems for others. There is no cure for lupus and there is no one test that can diagnose it definitively.
Miserandino first realized something was wrong as a teenager, growing up in Brooklyn. She studied dance at Manhattan-s famed High School for the Performing Arts. She kept getting hurt; some days she just couldn’t get out of bed. Doctors couldn’t figure out what was wrong. They-d tell her mother, Janet, Maybe your daughter just doesn’t want to go to school, but that was impossible. By attending the High School for the Performing Arts she was realizing a dream. Or she-d be told, But you don-t look sick. As she now says, Healthy was just the look I was going for.
When she was 15, she sought diagnosis at the Mayo Clinic. Doctors suggested it might be lupus, but she wasn’t formally diagnosed until she was in her early twenties.
In the meantime, she could no longer study dance. She briefly transferred to a Catholic high school before returning to the High School for the Performing Arts. Instead of dance, she studied stage management. She wanted to graduate from the High School for the Performing Arts and she did. Always creative, Miserandino majored in dance at Hofstra before graduating with a liberal arts degree in 1999. In between, she had to wear leg braces, wigs to cover up hair loss and she had numerous hospital stays. After college, she worked for a major marketing firm on Long Island. She stopped working about two years ago when her body told her she had to.
I had no choice but to change my life, Miserandino said. I think there-s an element of giving up control. Getting sick young is a hard thing. [You-re young], you think you can conquer the world [and] you feel like you can change anything.
Having lupus may have changed the course Miserandino set out on, but it hasn’t changed her. She-s a positive person with a positive outlook, who has taken the challenge of living with lupus and turned it into a purpose.
What started out as a Website with a mailing list of 10, has grown to one with a mailing list of more than 300. She-s gotten e-mails from as far away as Australia. The mother of a child with diabetes e-mailed her asking permission to use The Spoon Theory to help her daughter explain juvenile diabetes to her classmates. Miserandino responds to each e-mail. As the site has grown, she has expanded its content and plans to include even more information.
If they are making the choice to listen to me, I better make the choice to say something productive, Miserandino said.
Besides promoting lupus awareness through her Website, Miserandino is also very involved with the Lupus Alliance of America Long Island/Queens affiliate in Bellmore, a grassroots, volunteer-driven organization that is dedicated to educating and supporting people with lupus and their families. Each October, Miserandino enlists family, and friends to participate in the organization-s Walk Along for Lupus fund-raiser in Eisenhower Park. Eight years ago, she started out with a handful of walkers and raised $200. Last October, she had more than three dozen walkers and raised more than $4,000.
We make it almost like a celebration, Miserandino said of the walk. I guess in the back of our heads, there might be a time I can-t do it.
In all, more than 12,000 people participated in last year-s walk and more than $215,000 was raised, which will go toward furthering the Lupus Alliance-s efforts, including donating money for lupus research. Miserandino was one of the organization-s top 10 fund-raisers.
Whatever we do, she gets everybody she knows involved, said Jo Anne Quinn, executive director of the Lupus Alliance affiliate. People like Christine are the future of this organization. We don-t have a lot of people dedicated to lupus, but the people who are, are very dedicated.
Quinn calls Miserandino-s spoon theory, absolute genius. Quinn looks forward to Miserandino getting more and more involved in the organization.
She has a very good reason to be bitter and angry, Quinn said. She-s a young woman going through things that no young woman should have to, but she-s able to turn them around and make them positive things in her life. And, for that I really admire her.
Recently, Miserandino shared her story with a much larger audience. She was featured in an episode of Keeping Kids Healthy, which airs Fridays at 2:30 p.m. and Saturdays at 6:30 a.m. on channel 13. In its four seasons, the show has focused on children-s health issues, including child abuse, body image and chronic illness. It will begin to air nationally April 4.
The programs producers were introduced to Miserandino after coming across her Website, but it was through the Lupus Alliance that they finally connected in September. After speaking with her, the producers asked if they could feature her in an upcoming episode about lupus. She agreed.
In October, a camera crew followed her around for a day. She and her mother were interviewed at her apartment, and they were invited to the show-s studio at Montefiore Medical Center for an additional interview. Montefiore Medical Center produces the show.
Though most shows are split into two segments, the producers dedicated the entire half-hour show to lupus, and Miserandino-s story was featured prominently.
What struck us about her is a combination of how articulate she is and how she maintained her sense of humor and her sense of balance [after developing lupus], said Susan Berger, executive producer of Keeping Kids Healthy.
Gary Bramnick, a spokesman for Montefiore, said, It just became very clear when [the producers] did their research on lupus that a full show was warranted.
The response since the show aired in January has been overwhelming for both the producers and Miserandino. After it aired, her Website was flooded with activity. Also, Berger said more than 60 tapes of that particular show were requested by viewers. She explained that tapes are not offered for sale at the end of each broadcast so for people to actually request tapes takes a tremendous amount of initiative on their part. The only other topic that generated the kind of response lupus did, was when the show focused on lead poisoning.
Miserandino said that being a part of the episode gave her a chance to practice what she likes to do increase lupus awareness. Miserandino is in the process of compiling a book of short stories part autobiographical/part fictional that would include the spoon theory. She is currently undergoing training, through the Lupus Alliance, to counsel others. She is also considering adding public speaker to her resume.
Yes, I have [lupus] to deal with, but I-m not going to let that stop my personality, Miserandino said. I think it is important to still feel like yourself, to still look your best and feel that you can do your best.
For more information
To learn more about Christine Miserandino and lupus, visit www.butyoudontlooksick.com.
Keeping Kids Healthy airs locally on channel 13, Fridays at 2:30 p.m. and Saturdays at 6:30 a.m. To learn more about the show, and/or the episode featuring Christine Miserandino and lupus, log on to www.keepingkidshealthy.org.
The Lupus Alliance of America Long Island/Queens Affiliate-s 11th annual Walk Along for Lupus is scheduled for Oct. 17, 2004. A gala brunch fund-raiser is planned for April 25 from noon to 4 p.m. at the Melville Marriott. Tickets are $55 per person. To learn more about the organization and its upcoming events, visit www.lupusli.org or call (516) 783-3370.