What Is the Lupus Spoon Theory?


Applying the Theory

Because of this, it can be challenging to make plans ahead of time. You have to assess each day as it comes. You can certainly schedule your day according to an average number of spoons as long as you are willing to make adjustments when necessary, but that probably isn’t too much of a problem. Those living with a chronic illness tend to become experts at adapting.

Ultimately, I have found the spoon analogy is most helpful when explaining my condition to others. I know my limitations. I know what it feels like when I can’t do something I want to do. I know what it’s like to have to change my plans when my body tells me “this isn’t happening today!”

But I have discovered that others don’t know. They don’t always understand. I have had to slow down. I frequently get frustrated. I often want to do more than I am able to do, and it doesn’t always matter how badly I want it. The idea of “where there’s a will, there’s a way,” isn’t always true when it comes to lupus.

Last summer my sister invited me and my family to spend a day “having fun.” I had to decline, and I worried she wouldn’t understand.

She wanted to go to the local water park, a small amusement park, the zoo, and a miniature golf course all in one day. I could maybe participate in one of those activities, but there was simply no way I could do all four.

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In this instance, the metaphor of spoons came in handy. She may have been disappointed, but at least she understood it wasn’t about me not wanting to spend time with her, but rather I wasn’t able to do so.

Additional Thoughts

It’s important to keep in mind that the spoon theory is not limited to people with lupus. In fact, I think it can actually apply to anyone — but especially to people who have chronic illnesses or other disabilities.

I don’t believe all healthy people have an unlimited number of spoons (at least that’s what my husband tells me!) However, I do think healthy folks have more options for building up stamina to gain more spoons. The biggest difference is those living with chronic illnesses have learned to not take their spoons for granted — they have learned not to waste them.

The metaphor can actually work with more than just spoons. If you find yourself needing to explain why you can’t do this or that, choose a concept you can relate to — something creative that can offer a tangible experience to the person you are talking to.

For instance, think of a toothpaste tube. When you first get it, it’s really easy to squeeze out the paste. As it gets closer to being empty, you have to work really hard to squeeze that last bit out. Any concept of this kind can go a long way with helping others understanding the challenges, limitations and choices that have to be made every day.

Resource

But You Don’t Look Sick (The Spoon Theory written by Christine Miserandino)

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Infographiclupus spoon theory infographic

Explaining Lupus With the Spoon Theory

If you live with chronic illness, explaining your condition can be tough. The spoon theory was created to do just that, and has since become so much more.
by NewLifeOutlook Team on March 7, 2016
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