How To Share About Chronic Pain: "Spoon Theory"

A friend and neighbour, Alex introduced me to the Spoon Theory. She has ME (Myalgic Encephalomyelitis) or sometimes referred to as Chronic Fatigure Syndrome. A complex disease that is still not very well understood. To date scientists have yet to discover what causes ME. Many different factors, including things like infections, changes in energy production, immune system changes and even genetics could play a role. What they do know is that it's a chronic neurological condition that affects so many different body networks, including but not limited to your immune and nervous systems. Hallmark symptoms of ME are debilitating exhaustion, pain and something called post-exertional malaise (PEM). PEM causes your symtpoms to worsen after even a little bit of physical or mental exertion. These symptoms usually worsen 1-2 days after exertion and can last days or even weeks to come. A lot of ME revolves around pacing yourself.

I don't remember exactly what started the conversation about 'spoons' but Alex was likely sharing about having a lack thereof. That's when she pulled out The Spoon Theory to help me to understand my own energy limitations in regards to Fibromyalgia. I could use this theory to give others a tangible way to see and understand my condition.

The Spoon Theory is basically the idea that spoons represent our energy reserves. Most healthy people don't have to worry about whether they have enough energy to complete tasks like showering, cooking or having a coffee with friends. When you have a chronic condition it is not the same. The creator of the Spoon Theory, Christine Miserandino used spoons to explain to a friend how her condition (Lupus) affected her. With a chronic condition you have a limited amount of spoons, let's say ten spoons for the day. If you shower and get ready that day you use two spoons. You work in an office all day and that uses up three spoons. Going out for lunch with a colleague uses another spoon. Cooking supper and cleaning up account for three more spoons. You go for a walk to get some exercise and oops! That takes two spoons but you're now in the negatives. Using more spoons than you have doesn't work. The concept of borrowing some of tomorrow's spoons leaves you with even less spoons to use the next day. What further complicates things is that the amount of spoons you have day to day varies. Factors like how much sleep you got, how stressed you are and health related issues can add or subtract spoons. There are no guaranteed quanity of spoons on any given day.

Here is where the idea of budgeting your energy comes in. Just like making a financial budget to know where your money needs to go, an energy budget is important to try to allocate energy reserves to not just the things you NEED to do but also towards things that you WANT to do. Man, it took me a long time to wrap my head around this one! I'm a mom - I need to cook, clean, plan and budget so everything gets done! The mental and physical demands around being a mom; a parent in general, are taxing. I would regularly get to the end of my day completely devoid of spoons. I was constantly borrowing from the next day's stash of spoons with the promise of resting tomorrow. Except for tomorrow brought a new list of things that needed to be done and clearly not enough spoons to accomplish it all. This cycle can lead to a flare-up of symptoms and can easily land you in bed. Also concerning was the reality that I wasn't including any WANTS in my spoon usage and I was starting to almost lose a sense of self. Balance is important and we as humans all need to evaluate what our priorities are. (Even now while I sit here and write I realize I haven't gotten up to move in over 45 minutes and my body is starting to hurt. I'm going to stretch and I'll be right back!) When you're working with a limited amount of spoons you need to make some decisions. Sometimes you have to schedule things that need to get done to another day. Other times you need to delegate chores and errands to someone else. You don't have to be the one that does it all! Other times you might just need to delete the stuff that's not important or even distracting you from the things that really need to get done. Most importantly though is to set aside some spoons to do meaningful things that you want to do. In some ways those things take spoons from your pile but also give some spoons in return. Having coffee with a friend can use precious spoons but also the joy of being around someone you love and sharing laughs together can replenish that diminishing stack of spoons.

The Spoon Theory can help you find the words to explain an otherwise complicated condition to friends and family. I'll include a link below to Christine Miserandino's wesbite "But You Don't Look Sick" for her explanation on how the Spoon Theory works. There's also a downloadable PDF version of the explanation that you can keep for reference or share with other people as well.

Christine's website:

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

PDF version of "The Spoon Theory":

https://cdn.totalcomputersusa.com/butyoudontlooksick.com/uploads/2010/02/BYDLS-TheSpoonTheory.pdf