Grace for the Spoonies Dealing With Chronic Illness

Everyone has that annoying friend who is a flake — the one you make plans with but never know if they are actually going to show up. You had that precious hour blocked out on your calendar and got that “sorry, can’t make it!” text. Or you have tickets to a show and they cancel the night before. Argh!

My sister-in-law kept having to cancel plans with a potential friend, once for a work emergency and once for family. The woman confronted her, “Do you really want to be my friend?” It made my stomach drop because it was all too familiar…

Confession Time: I Am That Flakey Friend

I am generally bad at scheduling, bad at predicting transit time, bad at anticipating how long the errands will take. And I’m chronologically challenged (read: middle-aged), so I forget stuff (or forget where I wrote it down). But, all these things I work on and use tools (apps, reminders, alarms) to improve.

What I can’t change is the number of spoons I have available and the very real possibility that, on any given day, I might have none at all.

Spoon Theory

If you aren’t familiar with Christine Miserandino’s “Spoon Theory,” it’s a way of explaining the limitations of chronic illness. In short, people with chronic illnesses have a limited amount of energy (or spoons) to give in a day. When we run out of spoons, we “spoonies” can’t push through or fake it, we’re just done.

In our busy-busy world, reliability is important. Everyone’s time is valuable, and everyone wants to feel like their time and attention are a priority in their colleagues’ and loved ones’ lives. But for those of us with limited spoons, reliability can be a particular challenge.

A calendar for the chronically challenged

Source: Renáta-Adrienn, Unsplash

When I am out of spoons, pretty much all I can do is to take myself to bed for a solid heating pad/ice-pack cycle and hope tomorrow goes better. That means if there are plans of any kind, I have to leave early, cancel, or reschedule. And that really, really sucks for everyone. As a dyed-in-the-wool people pleaser, I hate to disappoint, inconvenience, or generally put anyone else out. Especially for something as “dumb” as being in pain.

But it’s not dumb at all. In fact, learning not to push through when spoons are low is a whole journey in itself, because sometimes I do have the capacity to mind-over-matter it. But when I do, it may take days or weeks to recover. I basically have to pre-pay spoons for an indefinite amount of time, and very few activities are worth it.

Right now I’m recovering from major surgery and my spoon levels are wholly unpredictable. They are overall rising for sure (I’m healing well), but as my body recovers from the trauma and adapts to all its new bionic hardware, some days I have more spoons than the day before, and some days I have none at all.

My unreliability is easier to explain these days because I have a six inch scar along my neck that everyone can see and understand — it’s a visible measure of my limitations. But as that heals and my body adjusts to whatever the new normal is, my limitations will be mostly invisible again.

I’m (obviously) not shy about sharing that I have this condition (Ehlers-Danlos Syndrome) and that I am always in pain. But that’s not all that I am or all that I talk about, and many people in my life don’t know. This is especially true of work colleagues, neighbors, parents in the soccer carpool, or others with whom the topic just hasn’t come up or become relevant.

The Stigma of Invisible Disability

In truth, disclosing an invisible disability like mine comes with real costs. There is stigma around disability in general, disbelief that invisible disability exists (especially with regard to subjective experiences like pain), and the exhaustion of having to explain what the condition is and how it affects me.¹

When it comes to having to cancel on someone at the last minute when that person doesn’t know about my condition, that stigma can feel insurmountable. The fear of being disbelieved or dismissed is so strong, I’d often rather be perceived as flakey — “Um, sorry, the dog ate my homework.”

Of course there are people who are actually flakey and cancel all the time because they don’t value others’ time. And there are legitimate excuses for canceling (like a work or family emergency). But there are also many, many people struggling with challenges that are hidden, like mental and physical health problems that make daily routines just that much harder. And we spoonies thank you in advance for your grace.