chronic fatigue syndrome

If you don’t have a chronic illness, don’t talk about your spoons

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.

Discussion

24 responses to ‘If you don’t have a chronic illness, don’t talk about your spoons

  1. Thank you for writing and for sharing your perspectives and experiences. Your voice is so important.

    I’m writing to provide you with my reaction to your blog post. I wanted to give you some feedback and to let you know that I think these kinds of articles do cause some harm to some people.

    I came across your article through a facebook share on a friend’s wall. Your article had an impact on me both because of the article itself and because I feel like it gives some shape to a viewpoint that results in toxicity towards folks like me. After I read your article I felt sad and lonely and angry. I surprised myself as I noticed a lot of tension in my shoulders and that I was fighting back tears of frustration.

    To explain, I need to describe myself a bit. Please bear with me. I’ve been struggling a lot in the last several years. Without getting too much into it, I have depression, some stress issues and a bit of an anxiety problem. I try to be very careful in how I describe myself because I am relatively functional. I think it would be inappropriate for me to appropriate any kind of status from the invisibly disabled community. That said, I’m not exactly neuro-typical either. Every day is a slog and there are precious few things that keep me going. The spoon metaphor is one of those things (at least for now).

    I read Miserandino’s article ages ago and felt an instant connection to the spoon metaphor. Not only did it give me some language to help connect with my many invisibly disabled and chronically ill friends, but it provided me with a tool to help explore my own struggles and to find a voice to express myself. At once I understood so much more about my mother (fibero), my partners (anxiety, depression, fibro) and others. I also understood a lot more about myself.

    The problem is that I *look* a lot like that friend of yours who texted you about how tired they were after their run. These kinds of articles or viewpoints make it look like I’m just some ignorant asshole who’s appropriating and twisting the spoon metaphor. It offers the kind of scorn and derision that often accompanies viewpoints aimed at “calling-out” others (I’m not offering any kind of judgment on the practice of ‘calling-out’ generally, here).

    I do occasionally make to the point where I can fit some physical activity in my day. Sometimes it’s a run; sometimes it’s push-ups in my office; sometimes it’s a boxing class. When I do I am absolutely and positively drained afterward. AND if I did manage to get a workout in it’s only because I spend the entire day (or week, even) desperately and carefully managing my spoons. I wouldn’t be surprised in the slightest to learn that I’ve texted someone about my level of spoons in relation to my physical accomplishments for the day.

    This stuff doesn’t just come up with running. Obviously that’s just one of your examples and it’s just one of mine. There are loads of ways a guy like me might look like an ignorant asshole for using the spoon metaphor. Every time I read an article like yours, or hear one of my invisibly disabled friends ask everyone around them to stop using spoon theory, it pushes that tool further and further away. These kinds of things make me second, triple or quadruple guess myself when communicating. It triggers my social anxiety and I spend time obsessing (using that particular term carefully and accurately) over the consequences of using the spoon metaphor: “Am I just coming across as ignorant? Is this going to make my chronically ill friend uncomfortable? Am I going to be judged for using this metaphor?” Ultimately, and ironically, it makes the whole exercise so spoon-costly that it’s not even worth it for me to use the spoon metaphor anymore. It reinforces my invisibility and the liminal nature of my existence: not neuro-typical enough but not disabled enough either.

    I appreciate your intent and the clarification in your post-script. I get that you’re targeting people who don’t really know what the spoon metaphor is. They haven’t properly considered it. They don’t understand that spoon theory =/= tired. The problem is that there’s a bit of collateral damage here. You may not have intended to hit me with it, but you did. Your clarification doesn’t identify that damage. It doesn’t correct it. The clarification also doesn’t acknowledge or apologize for the harm caused by the oversight.

    It’s really important to make sure that “able” folks don’t appropriate and change the meaning of really important tools and metaphors we need to help us keep going. But I wonder if there’s a way to do it with less judgment. Maybe it’s really helpful to remind people what the spoon metaphor is and means (that it doesn’t just mean that you’re tired). I think policing the boundaries of its usage is really problematic, though.

    That friend who was so proud of himself for dragging himself out for a run that he had to text you about it? Maybe he’s just inviting you to celebrate his accomplishment with him in language he truly does understand. Maybe he really is sick, or ill, or disabled enough to use the spoon metaphor. And… maybe he isn’t. I don’t know what the answer is. But I hope amazing and talented writers like you find creative ways to express these important views without throwing some of us under the bus. Please try to judge us gently when you think we’re misusing your language. Don’t turn the spoon metaphor into a way to measure how well someone fits into the disability spectrum. That’s not what you mean to do but that’s what this kind of stuff does.

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  2. Hmm I can see the writers point but I’ve thought if it a bit differently. Then again I’ve never had a healthy friend try to bond with me over Spoons.

    I think of the difference more in the ‘spoon factory, inventory, and economy. To me everyone’s factory has a different output, spoon currency level, and variable economy. I might need 5 spoons to your 1 for different tasks, or vice versa, and tomorrow I might need 3 or 7 for the same task. When I am out of today’s spoons I can take some from later but it costs more to take them the further out I go. Eventually the stockpile in my inventory, and subsequently my functionality and careful mask of normalcy, will falter and crumble.

    Taking from the inventory also taxes my poor decrepit spoon factory. As it tries to replenish my spoons, it over heats and unless I want to be completely without spoons, and have my body and/or mind completely shut down, it’ll need more and more time to cool down and repair.

    I don’t mind people talking about their spoons, though I’d prefer they do it with some understanding of Spoon theory and that there are differences. Maybe they are out of the current healthy allotment and they can push themselves but resting would be the healthier option. They have a healthy spoon factory, and a completely different internal spoon economic system, as do people with chronic illness different from my own, and even “healthy” people from each other. 2 people not suffering from chronic illness will also be different from each other. Yes I do know I over think things, its part of my charm(ing illness). 🙂

    I do understand the danger in normalizing the idea without any further thought or discussion of people’s meaning and intended usage. The original comparison did use spoons for an example of a healthy person too, the comparison is part of the reason it’s effective.

    My thought is instead of trying to ban the usage of the word from healthy people, refer them back to the original story, and maybe have a (non-heated) discussion. That way they know what they’re using as a casual reference.

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  3. I don’t agree with this. You have no right to say who can and cannot use it. Personally, I find the concept ridiculous and a bad analogy, but if someone else wants to use it to speak to their own truth and it helps someone else understand how they’re feeling, then there is no problem. Just because your disability is worse or more tiring than mine, doesn’t mean that I might not have issues that are just as important to me just as someone else might have a chronic illness or disability that is worse than yours.

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    • She’s not saying that at all. If you have any kind of chronic illness, then this analogy was meant for you. If you don’t suffer daily from one, to any extent, don’t use it. It’s in the same vein as someone using the phrase “I’m so OCD” to mean “I’m picky about this thing,” without understanding the underlying ways we suffer.

      Liked by 1 person

      • That’s actually a really great example, thanks! I hear people say that a lot, “I’m so OCD about this.” For someone who actually copes with OCD every day, that’s probably an exhausting and annoying thing to hear when all the person actually means is, “I’m being really fussy about this.”

        Thanks for understanding.

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  4. I’ve only heard the spoon analagy twice. I instead use my own way of describing my deprssion. I say While you are walking on sidewalks and floors, I’m walking in mud. On a good day. On a bad day, I’m not walking, I’m not crawling, I have to swim through the mud to get through the day.

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  5. Thank you… I often feel like I’m a ‘fake’ Spoonie because I talk about Spoon issues and don’t have CF/ME or Fibro or Lupus or MS etc … I definitely mostly have MORE spoons many days than many of my other friends … BUT because I DO have Anxiety, Autism, and Diabetes, a blood clotting disorder and possibly more (autoimmune?) besides that has gone undiagnosed … I definitely FEEL I have spoon issues BUT certainly NOT always to the extent of many of my friends (unless I’m experiencing a period of breakdown/shutdown/burnout) … I guess everything is relative 😉

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  6. Reblogged this on salt and iron and commented:
    This right here. When normal people are tired they rest and then they are better. When someone with a chronic illness is “out of spoons” their ability level is shot and their fatigue is overwhelming and may take days (or weeks or longer) to recover.

    Liked by 1 person

  7. THIS. A person with chronic fatigue’s “out of spoons” and a healthy person’s tired/wiped out/etc are NOT comparable. When my boyfriend is tired he sleeps and is fine. When I’m out of spoons, I’m out of commission no matter how much I sleep.

    Liked by 1 person

  8. What irritates me about the misuse of spoons is that it ends up erasing the difference between what happens to me when I run out of spoons and what my able-bodied counterpart is experiencing when they use the term. “Omg- I need to sit down for a bit, that hike chewed through my spoons like a garbage disposal hahahah” just means “oh- I exerted myself more than I thought and I need 10 minutes to recoup before we go again.” It is similar to people saying they are “so OCD about my cupboards” when really, they are just particular about how things are organized- not gripped by irrational and cripppling fear and dread that your beloved infant will die if the panko crumbs are in a box instead of a glass canister.

    When I am low on spoons, I have to decide if I can manage to eat or run a bath- I know that I can’t do both and still be able to treat my children like human beings worthy of care and attention. It means I can help my children get READY for their school concert- or I can attend, but definitely not both. I can wear the pants with the zipper, or the shirt with the buttons, or the lace up shoes- but only one of them at any given time, because the effort of keeping those laces tied, or doing up all those buttons (once!), or unzipping and zipping that fly when I go to the washroom is enough to BREAK me. It’s not just physical effort either- I can focus and concentrate long enough to pay online bills, or I can watch a movie with my husband. A fight with a friend, or one of my kids being stubborn about not wanting to do homework/chores means that I lose the ability to read and track what the words mean. A LOT of things never get done, so that I CAN do the few things I consider priorities.

    And the recovery time is VICIOUS! There’s none of this “Oh, I was up late last night and need an hour’s nap” or “My house is chaos right now, I need a coffee break to regain my focus” stuff that I see other people do. I push myself until my spoons are depleted and I take DAYS to recover! Days of fatigue, pain flares, vision disturbances, brain fog, restless leg, mood swings, and insomnia that keeps me awake until I fall asleep so hard and fast I don’t always make it all the way onto the bed.

    I often miss meals for days in a row. I frequently cancel doctor’s appointments because GETTING there has too much of a physical cost to make getting the medications I use to get through the day worth it.

    I have a friend that has different chronic health issues than mine, and so the amount of spoons used up my activites is very different. I am generally buoyed by company and socializing, but one of the things hardest for them is dealing with crowds. When they say they need to leave, there is no “ok, we will make our good-byes” or “right, time to head to the check-out”. There is no wiggle room. They have to leave RIGHT NOW. This often results in their partner finishing the shopping alone, or them texting apologies to hosts from the car. Occasionally, it has meant leaving a cart of groceries at customer service for the staff to reshelve and scrapping all other plans for the day.

    None of these things make sense to an able-bodied person. This just isn’t how running out of energy, or being stressed out, or having to ‘push’ themselves works for them. They will joke about needing a vacation to recover from their vacation. Haha, how silly! We were just so busy having fun! That’s my reality- even when I have a low-key, well-scheduled vacation I need multiple days of rest and NO PLANS to be able to get back to my usual level of energy and coping skills.

    But, I get why ‘normies’ think they understand. It’s almost impossible to wrap your head around how every single thing you do takes so much more effort- physically, mentally, and emotionally- for someone with an illness. It is virtually impossible to grasp that chronic illness isn’t like that one time you had a really bad flu, or when you were recovering from birth/surgery/that sports injury. The relentlessness of it is just too alien.

    Liked by 5 people

  9. I don’t no necessarily agree that spoons are a “measure or energy” or directly relating to fatigue. I took it to mean a flare of disease. Whatever your illness is, being out of spoons means being out of ability. You lose spoons you not only lose energy but you may lose the ability to walk, function, speak or think. You also may gain pain, anxiety, depression, frustration, sores, swelling, etc. it’s simply a way to compare and contrast life with and life without illness. I use this example daily with my substance abuse/mental health patients as well as live it with my own chronic physical illnesses. I think dismissing it or lumping the theory in as just a unit of fatigue is doing the theory a disservice.

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  10. I have anxiety, depression, diabetes, and am starting to be told by my doctors I might have fybro. I was taught the term spoons by my mother in- law and my husband’s godfather. The whole family except my father in- law use the term to describe moms energy level she has fybro. They use it for me now too. I’m not sure if I qualify to use the term, but I have started because they use it on me. I dont get mad or jelous when other people use the word or when other people misgender me or when people dont use my true name, especially if they don’t know me. But I get very anxious about things like this article because I’m never sure if what I’m doin is ok or misappropriation. Could someone clear this up for Me?

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    • Hi Sky! I’m about to leave my house in Seattle to go to California on a trip with my husband (actually seeing a doc about some research that might help my fibro), and when I get home I will add a note to the post, or maybe just a second post, that talks about this. I really failed to clarify WHO a spoonie is, that is isn’t just fatigue. For example, your anxiety and diabetes and depression are all chronic conditions, and they’re all ones that can be the source of fatigue. So yes, definitely, your using “spoons” is not the same in any way as a totally healthy person with normal energy levels and no chronic conditions using it just to say, “I have low energy”. Does that make sense? You aren’t appropriating.

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    • Hello my name is Scott. I’m part of a couple of Spoonie Groups.

      My issues are as follows.
      Juvenille Diabetes Mellitus (13), Epilepsy (24), Right Temporal Lobectomy (29), Visual Impairment (Prolific Diabetic Retinopathy) (34), Spinal Disorder (Transverse Mylitis) (39), Multiple Sclerosis (44).

      Saying you’re out of spoons without meaning more than you’re out of energy, is a misappropriation. If you can say “I’m out of spoons, because of _________” without naming off some normal physical activity, than it’s usually alright.

      Here are some examples:

      Good: “…I’m out of spoons ‘cauz I just jogged through the park, in all my bracing, even though my Multiple Sclerosis is targeting my legs, and my Juvenille Diabetes Mellitus has caused neuropathy that’s not letting me feel the soles of my feet.”

      And…

      Bad: “…I’m out of spoons ‘cauz I’m wearing the wrong shoes for running, and I don’t think I had enough lunch.”

      I hope this helps somewhat. Usually to talk about spoons in a way you would claim them, you have to have more then just a normally active day, where your wardrobe, a common cold, or a missing energy drink, would be a misappropriation. Most examples I can give you (and I’ve listed a lot up there) come with a chronic, dibiliating disease or conditiosn. I’d find it hard to justify ‘spoons’ without one.

      Liked by 1 person

  11. part time spoonie here. on chemo week i am def entitled to use the expression. 3 weeks out of 4 i get tired, but it is not the true spoonlessness that i get when recovering from chemotherapy. this gives me a unique perspective on what this really means, as the “normal” cancer fatigue is a piece of cake comparatively. the object of my treatment is to subdue the active symptoms so i can live with cancer as a chronic disease . so chronic, not chronic….

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  12. i have lymphoma and am trying with medical help to get it to the point of being a chronic disease rather than an acute one. the thing i find so useful about the spoon metaphor is in explaining to those who don’t know how it feels in the week or so after chemotherapy . the interesting part is that three weeks out of four i feel okay with minor fatigue or none at all. so i am a part-time spoonie who is in the unique position of knowing the difference between simply feeling fatigued and being out of spoons. it is a whole nuther dimension and i never get used to it.

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  13. I understand how you feel. But it may be a losing battle, trying to control how other folks use language. As a yoga teacher once told me, “let it roll off you like water off a duck’s back. Don’t spend your energy on something that makes you angry”. I always thought that was good, if difficult advice to follow.

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    • I’d argue I’m trying to influence, not control. 🙂
      And I think influencing people, in this case, is a worthy cause. But yeah, at some point there’s not a lot of forward movement to make on a particular issue. If I feel that coming on, I’ll let go.

      Liked by 1 person

  14. THANK YOU. It shits me up the wall when able bodied people try to appropriate disability language. We don’t “all get tired too”. I’m about to publish a post about the different types of fatigue as this is a huge issue for ME/CFS patients – the name “chronic fatigue syndrome” really invites able bodied people to make comparisons that aren’t accurate.

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