EDIT May 18th, 2017: Several people have written to ask if they “count” as a spoonie because they have a mental illness like anxiety or depression. Yes, yes! It’s right now 6am in Seattle, and I’m about to leave on a trip with my husband to California to visit the Stanford Infectious Disease Clinic, where Jose Montoya is doing research into what causes Chronic Fatigue Syndrome. I’m going to be a new patient, and see if they have any treatments that might help me. I’ll be back on Saturday, and I want to write more about this, but in the meantime, I want to apologize for failing to clarify what I mean by “chronic illness”. ANY chronic condition that causes fatigue, is a chronic illness. I’ve lived with panic disorder for over a decade, I’m painfully aware of the fatigue that it can cause. Depression, cancer, anything that is chronic and causes fatigue, is what I mean when I say “chronic illness”. In my case, the people using “spoonie” around me in a way that made me feel invisible are normal, healthy, without any chronic issues other than the usual aches and pains of being human. They have no illnesses, physical or otherwise. That was the group I was referring to in talking about my frustration about their co-opting of “spoons” when they just mean “low energy”.
The terms “spoon” and “spoonie” have shot into popularity among people living with chronic illness, as ways to describe their experience and themselves. Talking about “spoons” is a reference to energy levels. It comes from a personal story that Christine Miserandino shared on the internet around a decade ago, where she compared the daily allotment of energy that her illness allowed her, to a handful of spoons. Sitting in a cafe that day, her purpose was to explain to a friend what it was like living with a chronic illness, and holding out a handful of spoons was her spontaneous idea to illustrate how much energy her healthy friend woke up with every day. She began pulling spoons out of her friend’s hand to demonstrate what we all know, how normal activities of daily life will lower energy and make the average person progressively more tired.
Then she started the process over from her perspective. She took most of those spoons away and showed her friend what was left. This was her way of saying, “And here’s how much energy I wake up with.”
It’s a simple but powerful illustration, and it works because many chronic illnesses are invisible. You can’t see how much energy a person has just by looking at them. You don’t know how much energy it took them just to get out of bed or get groceries, or pick up their kids from school, or visit a friend, or any number of mundane things a person with normal energy takes for granted every day. You don’t see how much pain their in. The spoon theory became so popular because it made the invisible visible, and it means a great deal to many people with chronic illness. Not everyone resonates with the story. Some have different ways to describe their experience. This is okay, of course. We’re a diverse group. But my point today is that the spoon metaphor is, to many more than you might think, a powerful and validating symbol of solidarity. Many of us call ourselves “spoonies”. There are t-shirts with spoons, jewelry, art. Some even have a spoon tattooed on their bodies.
Lately I’ve noticed a lot of people who don’t have chronic physical and/or mental illness, talking to me about their spoons. Guys, you have to knock this off. I can guess what these well-meaning people are thinking.
“A ‘spoon’ is just a unit of energy.”
“If I use her word, it will be bonding.”
“If I use her word, she’ll understand me better.”
No, no, no. While it’s true that in this story a table utensil is meant to stand in for a unit of energy, that isn’t the point of the exercise. It’s meant to show how our natural assumption, that people who basically look like us are probably feeling about how we are, can be wrong. It’s also meant to help someone without a chronic illness understand how much extra work it took someone with a chronic illness, to get through their day, and why that day may not look nearly as productive or full of activity as yours.
Using “spoonie language” isn’t bonding us together. It doesn’t express to me that you understand my experience. It says to me that you didn’t hear the point of the story, and that you’re continuing to make my experience invisible by comparing it to yours. When you say, “Wow, I’m all out of spoons,” you’re saying, “I’m out of energy, just like when you’re out of spoons,” when in fact, it isn’t the same thing at all.
The exhaustion and pain of someone with a chronic illness, someone who is “out of spoons” by the early afternoon or even the morning, who suffers every hour with the emotional and social consequences of living with these physical limitations, is not the same experience a person with normal physical and mental health is having when they get tired at the end of a work day, or at the end of a physically grueling session of exercise or physical labor. You aren’t out of spoons. You’re out of energy. That’s what a normal person feels when they’re tired.
Here’s a handy guide:
DO talk about the spoons of someone you know with chronic illness, if you know that they like and use the “spoonie” metaphor for themselves. It’s okay to call and ask, “I’m feeling like today is a brunch day, what are your spoons like today? Would you like to come?” It’s okay to say to another friend about a mutal friend with chronic illness, “He had a great time at that party, but he had to leave early, he was out of spoons.”
Use “spoons” only to describe the experience of someone with a chronic physical and/or mental illness. Why? Because it keeps us visible in a gentle way. And you talking to me about my spoons isn’t going to offend me. Instead, it’s a way of saying, “I know that your energy runs differently than mine, and I want to acknowledge that, so I’m going to use the words you use.”
DON’T text your chronically ill friend, “Dude, I am SO OUT OF SPOONS, you wouldn’t believe the run I just had.” Your chronically ill friend may not have run in years (and may miss it greatly). Your being out of energy right then isn’t the same as their being out of energy after they brush their teeth or take the dog for a one-block walk.
When you’re out shopping and your friend says, “Oh crap, I’m so sorry, I think we need to head home, I’m crashing, my spoons are just gone,” don’t try to make your friend feel better by saying, “Oh me too, I have no spoons left either.” Why? Because doing so suggests to anyone listening that your experiences are equivalent. Know that they aren’t. Be aware that acknowledging that to your friend, is an act of affection and validation, and they will be inwardly thanking you for it.
In short: acknowledging what isn’t normal, gently and with affection (and if it’s me we’re talking about, feel free to add humor), is the gift you can give.
Your chronically ill friend – hey let’s use me as an example here – may be one of the lucky ones, who has a lot of love and support in her life. Many things buffer my experience of my illness. I have a loving family, financial security, and excellent access to healthcare, to name a few. Believe me, I know how lucky I am. But that doesn’t mean my life is normal. My experience of just being alive, every day, is colored by constant pain, fatigue, exhaustion, brain fog, and frequently severe anxiety. I didn’t ask for any of this. Nobody does.
The best thing you can do for me is to not pretend this isn’t happening. We don’t have to talk about it all the time. But don’t think it’s a favor you’re doing when you “normalize” it. It isn’t normal. And it sucks. Acknowledging that fact, every once in awhile, is a small but profound (and bonding!) act of kindness.
Categories: Chronic Fatigue Syndrome