What is a spoonie?
A question that comes up pretty often on Twitter is “What is a Spoonie”.
We often used the hashtag #spoonie in our posts or refer to ourselves as Spoonies, and those who are new to the term don’t understand why.
What is the definition of a spoonie? And, where does that term come from?
The origin is The Spoon Theory by Christine Miserandino of But You Don’t Look Sick.
She wrote The Spoon Theory to help explain what living with the fatiguing symptoms of Lupus is like. Since then many of us with other fatigue-related syndromes or invisible illnesses have taken the term as an endearing label to refer to ourselves.
We use the Spoon Theory often as to help us explain to others what it’s like to live with invisible illness and why some days we may be able to do more than others. We call our energy “spoons”, and those in the know may even ask us “how many spoons” we have rather than how we are.
I had a conversation on Twitter with an account claiming to be from a “physician authored” resource on Lyme disease. He (or she) identified the idea of Spoonie as being a bad thing, responding with “you are what you think” so they would never use that term.
“if you’re in a club you don’t want to be in, why describe yourself as member?”
and followed with…
“Why make undesirable club your identity? Why say club name repeatedly? Why wear club color? Why own it? Leave”
My response was simply that I don’t find it undesirable to identify myself with others who understand what I’m going through.
So, what do you think? How do you feel about identifying yourself as a Spoonie , or even as a Fibro Warrior, or a Lymie, or whatever nickname is used to describe your particular illness. Do you feel that identifying with others who are struggling as you are adds to your struggle? Or, do you feel that that identification helps you in some way?
Do you identify as a #spoonie? Share on XRelated:
Stephen Walker says
Hi Julie,
I am also a spoonie and quite happy to be thought of that way. That’s not to say that I am happy being a spoonie.
I encountered the Christine Miserandino story some time ago.
However, the notion that you are what you think is very relevant EXCEPT where being a spoonie is concerned. I did not develop MS just because I thought I would have multiple sclerosis. Indeed, until I was given my diagnosis of MS, I had no real idea of what a neurological condition was.
I love the name spoonie because I, and so many others, CAN relate to it. Perhaps, I move with the wrong crowd.
Julie says
Sounds like you move with the right crowd 🙂
David says
I suffee in hell 24×7 from CRPS. This terminology pisses me off as it is designed to allow the uneducated and ignorant to get a clue as to what our lives are like. Spoonie softens it and is detrimental to the sick and dying ever getting real support, real treatment, real cures. I am in full on rage over this disease and how the medical community and other so called humans treat me because of it. I am a human being with a chronic disease who needs a cure not a damn spoonie designed to allow people who cant deal with it feel better about themselves
Julie says
I didn’t write the Spoon Theory, however I did feel it resonated with me early in my illness. It was the first time that I’d read something that allowed me to describe to others in any way the difference between how I feel and how they feel. That the chronic fatigue that I feel is nothing like the “tired” that they feel. Not everyone identifies with the theory and that’s OK, there are other ways to describe it and the option to not describe it at all. I actually want those on the outside to have a clue as to the differences between how we feel and how they feel, perhaps in doing so they will understand and give us the support we need.
Judith Watson says
I guess I am a Spoonie. I have so many chronic illnesses and most a person cannot see by looking at me.
I am always in pain and some days, such as when I have a horrible Migraine, the pain is worse than others. Try having chronic Migraines since you were 3, such as I have had, and I am not almost 68. It has been a very difficult life, needless to say.
If saying you are a Spoonie or anything else, helps you or helps others to recognize that you do have several chronic illnesses that you cope with 24/7, then go for it! Unless a person has walked in your shoes, they have no idea what it is like to live with constant pain and multiple chronic illnesses.
Here is just part of my list: Migraines, Fibromyalgia, Arthritis, Blood clotting disorder, high blood pressure, high cholesterol, Mitral Valve Prolapse and leaking valve of my heart, TMJ, Trigeminal Neuralgia flairs, Depression, Acute Anxiety, PTS, Panic Attacks, Survivor of Childhood sexual, physical, and emotional abuse, Ulcerative Stomach Disease, Acid Reflux, Hyatal Hernia, fallen arches with extreme foot pain, Night Blindness, Macular Degeneration in left eye, chemical sensitivity….just to name a few! Try living with all those problems and take two handfuls of medications and supplements twice a day. But I rely on God, my husband, and my friends to help me through. Life is still worth living!
maria says
https://www.youtube.com/watch?v=YtYLv_RwwSA check out this great spoonie video
Julie says
Great video, I shared it on my Facebook page.