When I was six years old, one of my favorite card games, called “Spoons,” made me giggle. But it also gave me a glimpse of the pain of not having the same ability as others.
For multiple summers, our family vacationed with other families at a beach town. In the evenings, you might find nine of us kids sitting in a circle with two decks of cards and eight metal spoons.
The game is all about speed: pick up a card, discard another as fast as possible. The first kid to collect four of a kind snatches a spoon. As soon as one spoon is gone, everyone grabs a spoon for themselves, lightning fast. The one kid left without a spoon is penalized with a letter. If you get enough letters to spell “spoons,” you’re out of the game.
Most of the time, our games were punctuated by eruptions of laughter, heated debates, and squeals. But as one of the youngest kids, I remember feeling my face redden with shame when I wasn’t fast enough to claim a spoon, again.
What is Spoon Theory?
In that game, spoons were an object of status and speed. But spoons have also become a symbol of sustenance and support, in part because of Spoon Theory.
In 2003, a woman named Christine Miserandino was trying to explain her daily experience of living with lupus to a friend. Amidst the din of a cafe, she used spoons as a metaphor to demonstrate the limitations caused by chronic pain. Miserandino gave her friend twelve spoons to represent a daily allotment of energy, explaining that people without chronic illness have an unlimited supply. Miserandino invited her friend to walk through an average day by naming each activity, from getting out of bed to putting on socks to brushing her hair. For each activity that might take a toll on someone with chronic illness, Miserandino took away a spoon. By the end of the hypothetical day, this friend only had one spoon, leaving her to decide whether to run errands or eat dinner, whether to cook dinner or take care of the dog. If she tried to do too much, she would “borrow” from the next day’s allotment, which would make that day even harder.
Miserandino’s goal was to show how routine tasks, which many of us take for granted, can take a toll on folks with chronic illness. These folks have to be consistently conscious about their energy level and pacing. For individuals with invisible (and visible) health conditions, this well-respected Spoon Theory has become a lifestyle guide.1
Not Easy to Be You
This week, Ellie and I met with Dr. W., who coordinates care for Ellie’s chronic illnesses. We reviewed the progress we’ve made in the past month, including scheduling evaluations with a cardiologist, physical therapist and occupational therapist, all of whom specialize in POTS. We’ve also begun an intensive program run by a functional neurologist. I’ve spent hundreds of dollars on Amazon, buying recommended supplements and physical supports. Our lives have become a web of medical appointments, home treatments, and health decisions; occasionally, we peek through the cracks and try to talk about anything else, like politics, books, faith.
Dr. W. has the same conditions as Ellie, but after years of education and treatment, her symptoms are under control. After we discussed the Spoon Theory, she said, “I have to think about spoons too, Ellie. I only wash my hair once a week because it takes so much out of me. I compete in triathlons to keep my body in shape, but I take two days off afterwards. After this appointment, I will rest.”
“It takes a lot of work to be me,” Dr. W. confided. “But I have a thriving practice and I’m the mother of five kids. You will get there too.” She studied us across the Zoom screen. “It is not easy to be you, Ellie. You are dealing with a lot.”
Then she looked at me. “It is not easy to be Ellie’s mom, either.”
As we ended the call, I thought about how much it meant to me that Dr. W. paused to see us as people. She wasn’t just interested in Ellie’s body; she understood and named the emotional toll that it takes for both my daughter and me to walk through the confusing, dark wilderness of chronic health challenges.
Frustrated with Limits
Three years ago, when Ellie was weighed down by depression, anxiety and an eating disorder, I could almost feel the palpable weight that sank her mind and body. It became a daily part of parenting to try to rouse Ellie from bed, to cajole her to eat a sandwich, to try to “carry” her to school with my words. I embraced the challenge, but I couldn’t understand why Ellie had so few spoons. Before I really understood her illness, I hid my frustration, which occasionally simmered into rage, wondering if she had hidden her spoons under a mattress out of laziness or defeat, or maybe to spite me.
I’ll be honest: I’m still struggling to understand what it’s like for my daughter to live with chronic health challenges. In middle age, my body is as strong as it’s ever been, eager to bike, run, swim, or lift weights. I thrive on the responsibility and demands of serving as a senior manager at a nonprofit. I grew up breathing the oxygen of an active, hard-working family. Both of my eighty-year-old parents’ activity levels, even in retirement, mirror mine. My mom will beat you at pickleball, and my dad, the lawyer, could beat any of us in a debate.
So it’s hard for me to swallow the fact that my nineteen-year-old is worn out by a doctor’s visit or a ten-minute walk home from the bus stop. It’s difficult for me to see her take frequent naps. I hate seeing her skip her exercise program due to fatigue. She also struggles to accept her limitations. Although she has modified her activity significantly, she has days when she says mournfully, “I think I did too much yesterday. I’m exhausted. I hate having POTS.”
Empowered by Spoon Theory
But I’m realizing that the Spoon Theory offers gifts: wisdom and compassion.
Wisdom: In the Serenity Prayer, we ask God for the serenity to accept the things we cannot change, the courage to change the things we can, and the wisdom to know the difference. Perhaps this theory helps us to find wisdom, in deciding what we need to accept (a health condition that requires treatment and poses limits on functioning) and what we have the power to change (treatment, pacing, attitude). I suspect that my ability to release expectations of Ellie’s recovery journey, in terms of timeline or pathway, would be a gift to her.
We could also use the Spoon Theory together to plan family activities that prevent exhaustion. We could ask, “How many spoons will this activity require? Which activity is most important and how do we make sure you have enough spoons for that? Do we need to say no to anything?”
Compassion: Three years ago, I wonder if the Spoon Theory would have helped me to understand that Ellie’s mental health challenges deprived her of spoons, without her consent, the same way that her physical health seems to do now. Maybe I would have carried more compassion for her recovery journey if I knew that Ellie would have welcomed more spoons if Depression and Eating Disorder hadn’t stolen them from her.
As I face my ableism, I can grow in empathy, as Dr. W. did, for how hard it is for Ellie to live with chronic pain. Perhaps the Spoon Theory can help many of us parents turn away from frustration, resentment and attempts to control, to embrace compassion for our children. It could be one more tool to help us to love our children as they are, rather than the way we wish they were.
I’d love to hear how you’ve navigated difficult decisions around supporting people you love.
On this journey with you,
P.S. Before you go, please tap the little ♡. It offers “social proof” and lets others know there’s something useful here. Thanks!
Read more about Spoon Theory here: https://www.painscale.com/article/what-is-the-spoon-theory
I have never heard of the Spoon Theory but I am intrigued. I shared your article with my sister and plan to discuss it with her when I see her in a couple weeks. She has lupus, rheumatoid arthritis, congestive heart failure, and damaged lungs. She's on oxygen 100% of the time. I think she needs to know about spoon theory. I learn so much from you. Thank you for sharing.
I’ve never heard of “spoon theory,” but I believe thinking about life this way will deepen my compassion for those I know who have health challenges.