What the heck is a Spoonie?

"The Spoon Theory" offers insight as to what it is like to live with chronic illness. A link is provided for further reading to Christine Miserandino's personal story and analogy of what it is like to live with sickness or disability.  Christine lives with Lupus, but this story can be used to explain any invisible chronic illness...I have used it to explain MS, and my hubby has used it to explain it to our friends and family as well.  I gave the spoon theory to a friend who was asked to speak at our local MS society on compassion and understanding the person with MS.  Christine’s original “what is a spoonie?” article talks about her daily living with lupus...I plugged in ‘ms’ wherever it said ‘lupus’, and my friend said that she could see the light bulb over everybody’s head clicking on.  That right there is a wonderful feeling; that someone has found a way to explain an invisible entity that causes so many people grief, without whining or shouting or belittling.  The link to the spoon theory is at the end of this article.

What is a Spoonie?

A ‘spoonie’ is a person living with an invisible disease, such as Lupus MS, Fibromyalgia, RA...the list goes on. We have a certain amount of energy to use in one day...some days we have lots-other days, not so much. The spoons represent our units of energy...you are given the same amounts of spoons (energy) every day, no matter what the day holds in store for you. If you plan well, you make it through the day with a spoon or two to spare. Some days, even though you planned well, surprises and unexpected things pop up, costing you more spoons that you have.

I haven’t been a spoonie for that long. I was diagnosed with MS five years ago, but I have always had 'spells' of flu-like symptoms and strange pains for as long as I can remember. Every trip to the doctor made me feel more and more stupid. "There is nothing wrong with you-you look fine; the tests are normal, I think you are just stressed," the doctors would say. Trying to get my family and friends to understand that I wasn't feeling well was no easy feat, either-even now I still find myself explaining why I couldn't make the party, or that I couldn't drive because my sight was not that good. Sometimes the frustration of always having the people I loved and trusted question me made me want to run the other way and never look back.

“But you don’t look sick...” Well, not sick enough, apparently, until the morning I woke up and couldn’t walk. As I’ve grown up, I’ve learned that it’s not about looking sick. It’s about finding friends that will stick with you. Having people around you that will try their best to understand despite a lack of visual clues. It’s about keeping the people close who won’t steal your spoons, and will understand if you need to save them for later; and friends who will appreciate the spoons you sacrifice so that you can spend time together.

Accepting your spoons

Before I read Christine Miserandino's 'The Spoon Theory', it was impossible to put into words what it feels like to have limited energy and pain tolerance. Most people I met were healthy; the keepers of unlimited spoons. Sure, after a tough day they’d get tired. That’s normal. But none of them could grasp the idea of not being able to lift your arms to brush their teeth or hair. They couldn’t believe that you could wake up, get ready for the day, and end up having to go right back to sleep. Even I had a hard time understanding it some days.

When I read Christine’s theory, I cried. I bawled, actually. I don’t have lupus- I have MS. But I do have spoons, so few spoons. I thought “Finally! The words!” She’s given us a way to talk about illness more easily, to explain it in a way that won’t leave us exhausted and frustrated. And for me, at least, she’s shown a way to understand these things myself. I can’t thank Christine enough for these gifts (because I do consider them gifts). They’ve led me to better relationships with my friends, my family, and given me a better understanding of myself.

You can find The Spoon Theory at http://www.butyoudontlooksick.com/the_spoon_theory/ This is an amazing site that offers support and countless articles to help us understand the invisible diseases-it is also a great resource for caregivers. Check it out-you'll be happy you did :)

http://www.butyoudontlooksick.com/the_spoon_theory/