About Christine
Christine Miserandino is a Speaker, journalist, blogger, and patient advocate from NY. She also happens to be someone who is living with Lupus. Her writing has been featured in numerous newspapers, magazines, medical newsletters and television media.
From the age of fifteen, Christine Miserandino has been diagnosed with a myriad of illnesses from Chronic Fatigue Syndrome to Epstein Barr, and finally, many years later to a determination of Lupus. Though battling a shopping list of symptoms, Christine has consistently been told, by both well-wishers and doctors alike, “But you don’t look sick.” as if that was some kind of compensation for being chronically ill. Many times, being pretty or not sickly looking, made it harder to validate an illness you cannot see.
Christine started out life with dreams of being a dancer on Broadway. She was classically trained for years and studied at The High School of Performing Arts in New York City. She enjoyed acting, modeling and dancing. Just when a dancing career was on the brink, she was told that dancing would not be a good career choice for someone with joint pain. Christine studied at Hofstra University. It was there that she first discovered writing about her broad range of feelings, gave her a needed outlet and a voice to her pain. She switched her creative focus from theatre and dance and found a new focus in marketing. During her years at Hofstra University, she was a resident assistant, an active member of her sorority Phi Sigma Sigma, and she was a Homecoming Queen finalist. Although she had a full collegiate career, she had to spend most nights in bed, instead of at parties. She had to work twice as hard to get half the results of her peers in classes, because she was in pain or was exhausted and found it hard to concentrate.
Unfortunately, her limitless career was cut short due to complications with her illness. She was forced to leave school because a flare with Lupus was out of control. Plagued with heart and breathing problems, as well as pain and debilitating fatigue, Christine was left with no other choice but to take a medical leave from both school and her job. While most young adults are concentrating on their future careers, salaries, or a love life, Christine was worrying about medications, hospital stays and how to pay her bills.
Christine is currently a member of the board of directors for the Lupus Alliance of America (National) as well as the Lupus Alliance of America Long Island/Queens Affiliate. Her passion is helping those with Lupus through her writing, speaking, volunteering, and work as a patient advocate. Christine was recently named an honoree at the 2008 Lupus Alliance Long Island/Queens Gala in recognition of her volunteer efforts. In 2009 She was honored by Long Island Business News as a Volunteer Healthcare Hero. Christine with her family and friends has been the top fundraising team for most of the Lupus Walks. They take pride in trying to raise more funds then the year before. This year she has raised over $11,000.
Recently Christine has been speaking around the country as a keynote speaker and workshop leader for Lupus organizations as well as other health organizations. She is always open to speak for you.
In early 2011, Christine became a guest expert on WebMD’s lupus community page.
When not writing, blogging or speaking; Christine loves spending time with her daughter Olivia. She enjoys spending time with family and friends especially when scrapbooking, listening to music, seeing the theatre or watching movies.
Comments (13)
Hi Christine-
My name is Kari Ulrich, I have a chronic disease called Fibromuscular Dysplasia or FMD- it is a vascular disease that affects my arteries. Jennifer Moreen and I have have started a support group- we refer to your spoon theory quite often. I was hoping to get your permission to put a link to your website on Midwest Woman’s Vascular Advocates. We are a new group and although our disease is different than Lupus, we do have some overlapping features- fatigue / lack of energy being one of them. Most doctors do not contribute fatigue as part of our disease but I will you tell I am sure 99.9 % of people with FMD can relate to your spoon theory! I also was diagnosed with CFS secondary to ebv in my early 20′s. My ebv titers remained elevated for over a year. I was diagnosed with FMD 3 years ago.
You may look at our website at http://www.mwva.org
Warmest Regards,
Kari Ulrich
[...] is the only one who is too sick to go to BlogHer”! I’m writing this for people like Christine Miserandino, otherwise known as “The Spoon [...]
[...] About Christine [...]
[...] ago asking her to have someone on her show who has more courage and a greater voice than I do, Christine Miserandino, who formed the But You Don’t Look Sick website seven years [...]
[...] About Christine [...]
What an inspiring story!
Your family is so lucky to have you dear.
You may be suffering but you are a great fighter.
And because of that, I salute you.
It took 10 years to get a positive diagnosis of Lupus.As a nurse, now retired due to disability, I had an idea what it was but my labs were negative until now. Now I have explanations for everything that has gone on in my life since I was 18 ( I’m now 60).A myriad of problems now answered with one word …..Lupus
My sister died in 2000 from complications related to lupus and vasculitis. Two years later my other sister was diagnosed with lupus and she spent several weeks in the hospital fighting congestive heart failure! In 2005 I came down with symptoms that only partially fit the lupus model and Rheumatoid Arthritis. Finally, diagnosed with Undifferentiated Mixed Connective Tissue disease and fibromyalgia. I also suffer from chronic back pain. Some mornings I can barely get out of bed – people don’t understand because on the outside “I look healthy.”
My career was cut short due to disability and forced to retire. Now my passion is to help others become proactive in their health care and learn about their bodies. My motto, “you can’t fix what you don’t understand.”
I truly believe my sister would be alive today if she permitted others to help her. As a registered nurse I felt so helpless because she would not let me help her. She was 48 years old and should not have died. Her lack of understanding and an appreciation for the seriousness of her condition clouded her judgment.
I am so happy to have found your site!
Christine … thank you for your “spoons theory” if you substitute Mitochondrial Disease or Leukodystrophy for Lupus … it works just the same.
I coined that term right along with you or a book title that I never wrote called “think outside the box … I don’t look sick” … it was intended to be about my faith journey and life with Mitochondrial Disease and how awful it was to be patronized and told that it was all psychosomatic … until one day … I was so sick I really did have a psychosis, amnesia lasting 4 months and complete loss of function on my left side …. just previous I have severe quadrepresis, but the EMGs didn’t show any problems … because all my symptoms were metabolic and in my central nervous system of my “BRAIN” …
A little about me at my old not updated webpage … but it’s all pretty much still the same … except much more progressions and cyclic chronic health problems almost all in my autonmonic nervous system and muscles … brain problems but not “psychosomatic” real Leukodystropy and an adult-onset Metabolic problem called Mitochondrial disease.
Thank you so much for you writings.
Blessings
W
It took me almost 10 years to get a Celiac disease diagnosis, and – especially being a high schooler/college student in the first two years of my new lifestyle, a lot of my friends don’t fully understand that I am sick, too. I actually had a friend, who had known me for nearly a year and knew about Celiac, say, “Well, ideally you should have no gluten, right? But realistically, how much can you have?” He was astonished when I said, “Um, none at all, actually.” It took about seven months for even my parents to understand that just because I look okay now doesn’t mean I’m fully healthy. I also have been diagnosed pre-diabetec and hypothyroid (which, I theorize, could be related to the Celiac). All these things do make it harder to go out and do normal things – outings and vacations with my family are a pain, and for school trips, I’ve had to pack my own huge ice chest of food, then field questions about my weird looking sandwich when everyone else is eating spaghetti.
I really liked the Spoon Theory article, and I feel like it was a great way to let others at least semi-grasp the idea of what it means to be dealing with these issues. I am studying to be a doctor, and hopefully when the time finally gets here, I can help spread awareness of issues like these.
[...] Miss Christine Miserandino is the beautiful genius behind the analogy that has come to be known as The Spoon Theory. Not only did she come up with the analogy that helps so many of us explain what we are going through, feeling and just what it’s like for us on a daily basis but she’s also the author of the wildly popular ButYouDon’tLookSick.com. When she’s not out doing speaking engagements and generally just trying to live her own life that is. [...]
Hi Christine, I’ve just read The Spoon Theory and its brought me to tears. I’m 28 with arthritis, fibromyalgia and psoriasis. I’ve been living in my own world of hell for yrs and until today I never knew how to explain how it feels to be constantly tired and demorilised by life. I have daily arguements with my family who admit they dont understand how I feel, but they also never ask. Now I will show them your site and they can read the spoon theory, and hopefully we can get past this communication breakdown and move forward.
Thankyou for the words, that I’ve not been able to find myself
Jill xx
Christine…..you are beyond words as you convey what we go through with lupus and arthritic diseases. You have the savoir faire and the beauty that indeed makes people say BYDLS!!!!
I AM SCARED TO DEATH AND HOPED YOU MIGHT HAVE SOME INSIGHT……..ARE YOU FAMILIAR WITH PRIALT IT??? I AM ABOUT TO OPT FOR CHRONIC PAIN AFTER 26 YEARS OF ARTHRITIC DISEASES…..AUTO IMMUNE VS THE UNKNOWN. CAN YOU PROVIDE ANY ADVICE? CAN ANYONE YOU HAVE COME IN CONTACT WITH PROVIDE ANYTHING POSITIVE?
PLEASE HELP IF YOU CAN.
BEST TO YOU AND YOUR OUTSTANDING WORK.
VERY SINCERELY,
NANCY SCRIVENER TUCKER