Comments on: About Christine

By: Nancy Scrivener Tucker

Nancy Scrivener Tucker — Mon, 15 Aug 2011 16:09:51 +0000

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

By: Jill

Jill — Fri, 24 Jun 2011 13:55:06 +0000

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

By: What in the heck do you mean by SPOONS????? | Daily Mommy Survival

What in the heck do you mean by SPOONS????? | Daily Mommy Survival — Wed, 22 Jun 2011 18:23:57 +0000

[...] 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. [...]

By: Chelsea

Chelsea — Sat, 14 May 2011 18:25:04 +0000

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.

By: whelmka

whelmka — Sat, 23 Apr 2011 15:42:42 +0000

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

By: Linda Mundorff

Linda Mundorff — Fri, 18 Mar 2011 10:21:14 +0000

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!

By: Marlene Freudenvoll

Marlene Freudenvoll — Mon, 21 Feb 2011 18:34:07 +0000

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

By: Synflex

Synflex — Thu, 02 Dec 2010 19:09:21 +0000

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.

By: Today I was on the radio for National Invisible Illness Week talking about Organizing Tips & Parenting When Ill | But You Dont Look Sick?

Wed, 15 Sep 2010 20:57:32 +0000

[...] About Christine [...]

By: Going on Oprah…In My Mind! – Mama Sick

Going on Oprah…In My Mind! – Mama Sick — Fri, 03 Sep 2010 02:05:09 +0000

[...] 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 [...]