The Spoon Theory Gave People the Wrong Idea About My Illness


Many people with disabilities that affect energy levels have adopted the Spoon Theory as their mantra. Indeed, when I first read it, the words struck a chord with me — so much so that I posted them on social media and asked friends and family to take a look. I wanted them to better understand me. That may have been a mistake. You see, I’ve come to the conclusion that the Spoon Theory doesn’t fit my life. 

Firstly, for those not in the know, I shall give a brief description. The Spoon Theory is a concept written by Christine Miserandino whereby energy is equated to spoons. Basically, as a chronically ill person I would have a finite amount of spoons per day. Each activity I do would remove some spoons until eventually I had none left. The point of it is that we don’t have endless reserves of energy/spoons. 

This is very, very true. In basic terms, the Spoon Theory is an excellent way of describing life with a chronic condition. However, I find I just can’t embrace it. 

One reason is on a given day I have no clue how many spoons I will have that day. For me there is no set amount I wake up with. I cannot bank on having six or 12 or even one spoon. The theory states that going over your energy reserves on Monday will take away from Tuesday. This is certainly true. But I can have a completely restful day, and still have nothing in the tank for the next day. Until I open my eyes and take that first wakeful breath, I have no idea what kind of day it will be. Even then, I can never be sure. 

Often I wake in a morning and think, “Yes! Today is a good day!” Then, within hours, or even minutes, the tides have turned. Maybe my spoons are ninjas? Maybe the borrowers have been rifling through my stash? Whatever it is, I can go from having just enough energy to less than zero quicker than a scrambling fighter jet. Sometimes it’s due to a weather change, sometimes it’s stress. Often I have no clue whatsoever what happened. 

On top of this, the amount of energy activities take changes on a day-to-day basis. I cannot plan my day around how much energy things will take from me. Because I do not know. A shower may be doable on Monday. On Wednesday it may feel like bricks are pummeling me rather than water. My joints may feel stiff and rusty. Everything could take 10 times more energy. I cannot count on being able to do tomorrow what I managed today. 

Finally, there’s another complicating factor: Pain. Let me tell you now, you can have all the energy in the world, but if you feel like someone just drove a dumper truck over you, you’re not going anywhere! Pain entwines through my entire body in a daily basis. I never know how tightly it will grip. On a good day I can hide it. On a bad day it consumes me. 

So yes, the Spoon Theory is fantastic. But unfortunately, it gave people the wrong idea. They thought if I rested, I could then plan activities. If I worked my day so I didn’t have more than one thing happening, then I could do that one thing. They had the impression that I had some vestige of control. I do not. I try. I try not to let my health rule me. But at best, I’m flying by the seat of my pants through an ever changing roller coaster of pain and fatigue. At worst I’m being pulverized by a Hulk-type monster. Either way, it’s a whole lot more complicated than simply rationing my Spoons. 

Though I’ve come to realize it doesn’t fit me, the Spoon Theory is still worth a read! 

Follow this journey on This Little Life of Mine.

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? Check out our Submit a Story page for more about our submission guidelines.

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