One of my cancer support groups shared the concept of spoon theory, which was conceived by a very creative woman named Christine Miserandino. Christine is chronically ill with an autoimmune disease called lupus. Lupus takes a toll on her energy in ways that sound a lot like the fatigue and erratic energy I experience with cancer. I was amazed by her story.
Christine and a friend were enjoying a meal at a diner. Her friend asked Christine to tell her what it felt like to be chronically ill.
She wrestled with how to explain the myriad of daily details that are affected and how to clearly explain the emotions a sick person goes through. Christine had an inspiration. She picked up the spoons on their table, gathered more from nearby tables, and handed this fist full of spoons to her friend. Then she asked her friend to describe a typical day, starting with waking. With each described activity, Christine took one spoon—or more—from her friend. The spoons were symbolizing the energy required for each activity.
As the spoons were taken away, the friend realized she had to start thinking about rationing the spoons. As she did this, she experienced the struggle of having limited spoons. No matter how hard she tried, there were no more spoons by 7 p.m. on this fictitious day.
Generally, those unaffected by illness or other significant life struggles have ample spoons for their daily tasks and activities. People with chronic illnesses do not. Chronically ill people must make choices and sacrifices every single day because their illness taps their energy and leaves them less to work with. Christine’s friend better understood what it was like to live with such loss.
Every single activity takes energy or, as we’re calling it, spoons. Getting ready in the morning, dealing with medication, spending an hour or two writing, or binge-watching a few shows might only use one spoon each. Things about which you don’t get to choose, like brain fog, confusion, sadness, pain, nausea, and headaches, use up spoons too. Things like keeping up with household tasks, a three-hour round trip to get a two-hour infusion, meal-prepping dinners for the freezer to see you through the too-tired nights, or time in deep discussions, even with people you love a lot can require two, three, four spoons or more.
As one who spent a good portion of my life pushing through exhaustion and pain, it’s been a harsh reality to discover that I can’t do that with limited spoons. When I’ve tried, I’ve ended up flattened, unable to proceed. When I’ve tried extra hard and somehow managed to eke out a little more, I’ve paid for it by having even less energy the next day and sometimes for days after that.
Some mornings, I wake up feeling like I have a good supply of spoons. On other days, for reasons like treatments or big activities or for no discernible reason whatsoever, I know I have a more limited supply. You can’t manipulate the spoons too much. Going super easy one day does not mean you can expect to carry spoons over to the next day. That only works with Weight Watchers points; even then, you forfeit any remaining extra points at the end of the week.
Sometimes, I can predict when my spoon count will be low. Other times, I’m blindsided. I’ve always been a list maker and planner who lives by the calendar. Yeah, that doesn’t work well when you don’t know how many spoons you will have in inventory on any given day. I’ve developed more self-compassion as I’ve come to terms with this.
I’m getting a handle on spoon theory. I’m learning to sense and remember how many spoons certain activities require. I’m figuring out how to gauge how many spoons I have to start with. I’m learning to pace myself. That means some activity, then a break, which could include a nap, before moving on. When I am pacing well, it leads to better and more gratifying use of time. I pause, notice how I’m doing, and move on with thoughtfulness. Ignoring my limitations is not an option. My body just gives out. I have to work within my limitations to have the energy for things that matter most.
There is a positive aspect to all of this. I may be filling my days with more of what means more to me than I ever have. It’s a variation of quality over quantity. Looking back, I was living at such a high speed that I missed a lot along the way. I’m so much more purposeful now. It’s pretty cool.
I’m learning to let go of wanting perfection, that obsession to have it all. I have experienced doing just a part of something I love with much joy. I’m also using the skills from my career and breaking the projects of my life into smaller bits so I can manage them better. That even includes letting others help me in ways I’ve never considered.
Certain people, tasks, and some favorite experiences are at the top of every list. On my new normal days, those stay on the list. When I’m low on spoons, I have to consider even those top priorities, notice which uses up most of my energy, and decide where to cut things to get what I need from the day.
I’m doing this all the time now. I know. I know. Often, I don’t look sick. But looks can deceive. Fatigue and pain are often invisible. My beloved butter yellow 450SL always looks sleek and powerful, but I could find myself in a difficult situation if I ignore vehicle maintenance and fuel levels.