The Tightrope Concept: An Alternative to Spoon Theory
If you’re reading this you probably have at least a passing understanding of Spoon Theory, or are my mom (Hi Mom!). In case you don’t fall into these two categories, here’s a quick breakdown.
Spoon Theory is an analogy started by Christine Miserandino (www.butyoudontlooksick.com) to help explain the limitations of having a chronic illness, in her case, Lupus. She was sitting at a diner with a friend when first offering up this analogy and used what she had available to her to try to explain: spoons.
Basics of Spoon Theory
The basic idea is that spoons represent energy and capacity to get things done. Those who are not chronically ill have unlimited spoons to spend throughout the day for things like getting up, brushing their teeth, cooking breakfast, cleaning the litter box, getting dressed, etc. etc. etc. The chronically ill, however, have a limited number of spoons and must choose how to use them. On a good day you might have 20 spoons, but on a bad day you may have 5.
Spoon Theory was first introduced to me by a physical therapist while I was recovering from knee surgery. You see, I’m a Type 1 Diabetic, and recovering from a rather simple knee surgery was proving challenging — I was also job searching, dating, and attempting to live somewhat comfortably in New York City (which is its own special energetic challenge).
I was intrigued by Spoon Theory, but it never really resonated with me completely. It wasn’t my analogy. Somehow spoons did not capture how I felt about being chronically ill and by some definitions disabled. (The U.K. and some places in the U.S. classify diabetes as an invisible disability.)
One day at lunch with a colleague who has Celiac Disease I stumbled into my analogy. This colleague was being empathetic enough to describe his struggles with avoiding gluten and the terrible side-effects that can result when he fails at said avoidance without conflating it with the struggles that I have as a diabetic to constantly manage my blood sugar. I listened and realized that I appreciated his acknowledgement of the ‘severity’ of my disease relative to his, but I also didn’t want to negate his experience of living in the world with a chronic condition. That’s when I stumbled (pun intended) on the Tightrope Concept.
The Tightrope Concept
I presented the idea that most people are walking through life as if it is a wide open parking lot floating above the ground. (Stick with me here.) There may be obstacles, and if they get too crazy they might approach the edge and risk falling off, but they have a lot of space to move and run and even maybe do some gymnastic tricks.
Instead of having the breadth of a parking lot to play, I explained, having Type 1 Diabetes is like walking on a tightrope.
I’ve been a diabetic for 14 years, so at this point I’m pretty darn good at it. Just as someone who has practiced walking a tightrope for over a decade would probably have a relatively solid level of competency for staying up there. But here’s the thing, some days it’s windy, or the tightrope is a bit wobbly, or I’m a bit tired, and suddenly it is all I can do to cling to the damn thing.
There are days when I can do careful cartwheels along the length of my tightrope, but there are also days when I just have to clutch to it in a gale force wind and it takes 90% of the energy of my day just to manage to not fall off.
After I explained this to my gracious colleague, I presented him with a possible analogy of a sidewalk for his Celiac Disease. While ‘normal,’ non-chronically ill people might have a parking lot to play in, he’s got a sidewalk. There’s still quite a lot of room to move and get creative, but he has to be mindful of the edges, they’re a lot closer than they are for many of our peers.
Why the Tightrope, Sidewalk, and Parking Lot?
I like the analogy of the tightrope, sidewalk, street, parking lot, etc. because it can take into account my mastery of my chronic illness, but also my complete lack of control over it on some days.
I acknowledge that this analogy may not resonate with everyone, and may not at all be applicable to your chronic condition that I don’t have an embodied understanding of living with each day. However, I present it as my analogy, and perhaps my answer to some of the problems that have arisen as people without chronic illnesses co-opt Spoon Theory for their own lived experiences of exhaustion, burnout, and emotional labor.
I was inspired to finally write this all down by an article I saw appear in a friend’s timeline recently by Naomi Chainey entitled Stop appropriating the language that explains my condition. In this great piece she makes her case that, “Spoon Theory was intended for the chronically ill.” And I tend to agree. It is a great analogy, but using it to describe every energetic failing anyone experiences dampens it effectiveness to accurately describe the struggles of the chronically ill.
The Tightrope Concept is for everyone. I will challenge, however, that if you’d like to take it and make it your own, please be mindful that your perception of what you define as a tightrope might be challenged when you meet someone who is battling cancer as a single mother and suddenly you realize that perhaps you have a sidewalk, or at least a small path, instead.
However big you feel your path to walk and run and play is, the point is to understand that the tightrope, sidewalk, slack-line, etc. is not visible to those around you. They might assume you have a parking lot, as they do, particularly if your disease or condition is invisible as Diabetes, Lupus, Chronic Fatigue, and Fibromyalgia often are.
It’s About Empathy
The point of all of these analogies is to amplify empathy for our fellow human beings. My pain and struggles aren’t more important, more valid, or even more difficult than yours, but sometimes I need a vocabulary to explain to those around me why I was late to work after my blood sugar was so high I threw up, or why I have to get food now before I pass out.
If the Tightrope Concept resonates with you, take it, run with it — or cling to it, depending on your day. If you think it’s reductive and doesn’t account for an important factor of your struggles with chronic illness or disability, please, please, let me know. I would love to hear your thoughts and feelings on this, and any other topics relating to how so many amazing people struggling with so much get through the day and continue to fight to thrive and dance and work and make space and time for those around them.
