How many spoons do you get?
August 23, 2010 7:53 AM   Subscribe

The Spoon Theory. A story specifically about living with lupus but which also applies to many other chronic diseases. From the site, a resource for those with chronic illnesses and invisible disabilities.

A lot of their other articles are worthwhile as well, including Sick Humor: The top ten worst suggestions commonly given to someone with a chronic illness and Handicap Parking and My Invisible Illness.

The article is pretty old but I hadn't run across it before and it doesn't look like it's ever been on Metafilter.
posted by kmz (43 comments total) 42 users marked this as a favorite
Nice. Me mum's a lupus sufferer. Will be passing it on. Cheers!
posted by Samizdata at 8:05 AM on August 23, 2010

I ran into this concept a couple of years ago, and have used it extremely extensively since. Most recently was when I explained it to my mother, to help her explain to caregivers why my (feisty, brilliant, cognitively utterly fine) 94 year old grandmother in congestive heart failure and kidney failure COULD cook her own breakfast or sort her own pills or wash her own dishes or whatever, just not all in one day! It's such common parlance in my circle of friends, we say things like "OK I can do this but seriously this is my last fucking spoon today." Great concept, great post.
posted by KathrynT at 8:10 AM on August 23, 2010 [3 favorites]

As someone with ulcerative colitis, I have taken a different approach I learned from my mother.

When I'm asked about my repeated trips away from my desk, the circles under my eyes, or my prevalent languidness on certain days, I tell them exactly what the issue is:

"I have bloody diarreah, my large intestine has dark purple sores, and I'm on 50mg of predisone. Anything else, sir?"

Twice, I've watched as a form with stickers on it is placed back in a drawer. "Random" drug tests, my arse.
posted by Bathtub Bobsled at 8:14 AM on August 23, 2010 [10 favorites]

I'm with KathrynT--with some friends we do use this a shorthand. It really is a helpful way to visualize the way your resources are limited when you have chronic pain or illness.

I like the Invisible Illness link. A friend sent me a link awhile ago to a t-shirt that said, "My disabling chronic illness is more real than your imaginary medical expertise," which I really liked...can't find it again now, of course. Oh, here it is! Kind of text-heavy for a t-shirt but the sentiment resonated with me.
posted by not that girl at 8:44 AM on August 23, 2010 [7 favorites]

Oh, Bathtub Bobsled, I wish I had just a little bit of what you're so thin!
posted by not that girl at 8:45 AM on August 23, 2010

On re-reading that article, I would only take issue with sentences like, "I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one." As I've talked more with people about my own chronic pain, I've been astonished by how many people I know who also have chronic health problems I didn't know about (Facebook has actually been really eye-opening in this regard). I get that it feels like "everyone" else has unlimited spoons but I've felt much less isolated (and also, oddly, much less special) as I find out how many different ways the human body has to go wrong.
posted by not that girl at 8:53 AM on August 23, 2010 [4 favorites]

Have someone with a very severe but "invisible" disabling illness in my family. All of this is great (we do indeed talk in terms of spoons because of this.).

re: "Now, if I could just get people in parking lots to quit giving me dirty looks when a “normal” looking woman gets out of a car parked in a handicapped spot."

Try changing that to "a fat woman with no visbile disabilities" and it gets even *worse*, because now it's not just a normal woman illegitimately using the handicap spot, it's "some lard ass who thinks her fat qualifies as a 'disability'."

There's a lot of hate for fat people out there, and if you're fat and inobviously disabled, God help you.
posted by edheil at 8:56 AM on August 23, 2010 [17 favorites]

Thanks for this. One of the few things that I believe to be pure Good is gaining insight into the lives of people one might otherwise objectify with rapid-fire subconscious categories. One of the problems with the kind of liberal-citizenry that declares everyone equal and valuable is that it makes it easy to stop at the surface of things- most days, I size up basically everyone as another iteration of me: Human. This is a good strategy for preventing prejudice- that homeless person is a Human who didn't have my privileges; that irritating customer service representative is a Human with a particularly shitty job working within a limited, procedural script. It's a really bad strategy, though, for actually empathizing with people, because it amounts to imposing your own subjectivity onto them. The next time I see or meet someone with lupus or fibromyalgia I'm going to pause before I assume that, like me, they're just a Human with a handful of spoons.
posted by farishta at 8:57 AM on August 23, 2010 [2 favorites]

Bathtub Bobsled, I realize I don't know your sense of humor and probably shouldn't have cracked that's just that people I've known with the kinds of illnesses that mean they often can't get the full nutrition and calories out of what they eat seem to get comments like that all the time, and the "Top 10" list linked in the post combined with your comment reminded me of it. My apologies.
posted by not that girl at 9:12 AM on August 23, 2010 [1 favorite]

Certainly no one should look askance at anyone using a handicapped parking spot, but I think part of the reason is structural and not personal. If I go to a major store like Target or Walmart, there are almost always about 15 open handicapped spots, no matter what time of day or night I go. Clearly the supply far outstrips demand. This leaves non-handicapped persons parking much further away for no apparent reason. This is obviously not the fault of the individual handicapped person, but I think it does lead to some generalized, though misguided, resentment of handicapped parking in general. Many people I know have commented on this, so I don't think it's just me. My local Walmart is nicknamed Baghdad because of its chaotic and hostile nature, and it's frustrating to circle the lot for parking when there are so many open spots right there. In my opinion, the evaluation of whether or not someone deserves one of those spots is an unfortunate side effect of the legal requirement to have so many of them.
posted by desjardins at 9:20 AM on August 23, 2010

This leaves non-handicapped persons parking much further away for no apparent reason.

Opening up a few of those spots wouldn't mean the difference between parking in the back of the lot and parking up front, though. It might save any given individual a few car-widths since everyone would be farther forward, but we're talking six or seven feet here. I'm fine walking an extra few feet on a Wal-Mart trip in order to assure spaces for the handicapped.
posted by farishta at 9:27 AM on August 23, 2010 [16 favorites]

This is really useful. As someone with multiple invisible disabilities, I find it very hard to explain my limitations, even to people with similar invisible disabilities.

I make no secret out of the fact I have trigeminal neuralgia and rheumatoid arthritis. But it still amazes me how many people - even ones that I'm around regularly - still don't understand why I limp or have to spend a whole day in bed every so often. I'm not being lazy, I'm not exaggerating the pain. I'm really not. If I need a day off, or need to miss a class - I promise, it is because I am in thought numbing, exhausting pain. If the dishes don't get done, or the laundry doesn't get folded, really, I have a reason. If you see me popping hydrocodone like mad, it is because I HURT.

Being disabled is not a moral failing. Doubly so if it is an invisible disability.

An even stands out in my mind that happened a few months ago, which blew my mind. I sat down on the train in one of the disabled seats near a door, because my hip was hurting so badly I couldn't stand. A few stops later, a woman with obvious vision problems gets on the train, turns to face me, and goes "I need that seat". I sort of blinked, and went "Ma'm, there is a seat directly opposite me, equally near the door. I have a bad hip, and it really hurts to get up." She glared at me, and demanded I yield the seat to her, saying "Well, it doesn't stop you from getting up. I need that seat." Rather than cause a fight, I pulled myself up to my feet and limped the three feet to the seat directly opposite. She glared at me the entire train ride until she got off... through the door next to the seat I was sitting in. I'm still totally confused by that encounter.
posted by strixus at 9:34 AM on August 23, 2010 [8 favorites]

Oh, Bathtub Bobsled, I wish I had just a little bit of what you're so thin!


Bathtub Bobsled, I realize I don't know your sense of humor and probably shouldn't have cracked that's just that people I've known with the kinds of illnesses that mean they often can't get the full nutrition and calories out of what they eat seem to get comments like that all the time, and the "Top 10" list linked in the post combined with your comment reminded me of it. My apologies.

No worries, I have heard your first comment more than you'd imagine. What I find far more disconcerting is how many times a very intrigued woman will ask me "Is it something you can catch, or is it genetic?" and seems disappointed when I mention studies suggest the latter.

We live in pretty f'd up times, I must say.
posted by Bathtub Bobsled at 9:42 AM on August 23, 2010 [3 favorites]

I'm fine walking an extra few feet on a Wal-Mart trip in order to assure spaces for the handicapped.

Any time you have a cart, parking close to the door is actually a disadvantage anyway. You really want to be close to the *cart return*. Especially if you don't want to leave kids/animals in the car alone or if the car is already unlocked and running, etc.

Also: Hidden disability and even-more-hidden offenses at stupid/repeated questions are one of the main reasons I don't try to make small talk with people. The other main reason being I don't care.
posted by DU at 9:47 AM on August 23, 2010 [1 favorite]

Any time you have a cart, parking close to the door is actually a disadvantage anyway. You really want to be close to the *cart return*.

You seem to be assuming that people will go out of their way to return their cart if their space is not convenient to the cart return. I assure you --for the assholes in my town at least-- this is not at all the case. They just leave the cart sitting wherever in the parking lot.
posted by Lentrohamsanin at 9:55 AM on August 23, 2010 [2 favorites]

I wish I had read this years ago. Great post!
posted by Jade5454 at 10:00 AM on August 23, 2010 [1 favorite]

The spoon theory is well known in my neck of the woods. I was surprised this apparently isn't a double.

That said, I'm one of those "invisible" chronic folks. I've had severe chronic asthma since I was 5. I take meds every day and when the air quality is low I definitely have a spoons quota, though it gets better in air conditioning.

Anyway, there was a time when I was on less subtle meds (albuterol, primarily [derived from adrenaline] - before that, theolair [derived from theobromine, one of the stimulants in chocolate]) where I weighed about 120 pounds (I'm 6'2", so that was definitely in the anorexia zone). Now that I use more subtle meds (advair, a combination of a more subtle albuterol and a local corticosteroid), I gained a significant amount of weight and I weigh 230 pounds.

I've had doctors suggest that I should lose some weight, and my counter suggestion is to put me back on albuterol (which is cheaper). They never go for it.

I'm not sure what this proves, except that doctors seem to have different standards for fatness and for asthma. I'm still convinced that it's the asthma that'll kill me when I die, not the fat.
posted by kalessin at 10:02 AM on August 23, 2010 [1 favorite]

I wish everyone had read this years ago; would've made my life considerably easier. Can't believe it's never been posted here, I've been using it as a resource for a while now (I remember emailing my fiancee with it soon after we starting dating)

Bathtub Bobsled: it's not just this time that's messed up
posted by jtron at 10:03 AM on August 23, 2010 [2 favorites]

Great post! Someone sent me that article a few years ago and it helped me out a lot. Not just with talking to people who didn't have to plan out their every move, but it also helped me be more patient with myself. It is no fun to constantly be castigating yourself for not being able to do all the things! like grocery shopping AND laundry AND dishes in one day, or whatever. Thinking about tasks in terms of how much energy they're going to consume made it a lot easier to make realistic plans about how a given day was going to work.

(I'm still bad at it sometimes, though. Today it is raining so my wonky limb is acting up and I can't stand on it for too long, but I WANT TO CLEAN ALL THE THINGS WHY CAN'T I DO IT ARGH.)
posted by bewilderbeast at 10:19 AM on August 23, 2010 [3 favorites]

My wife has MS. She's lying in bed right now unable to go to work today because she used up all her spoons on a camping trip with her brother's family. She would probably have been OK if it wasn't for the heat wave that hit on Saturday and lasted all the way through the night (the overnight low only got down to 78, a record high for a low temperature here). I knew when I got up Sunday morning at 8 AM and it was already 85 degrees that it would be a rough next few days for her.
posted by mr_crash_davis mark II: Jazz Odyssey at 10:37 AM on August 23, 2010 [3 favorites]

I love the spoon theory. Like others have said, I've used it for years as a really fantastic way of explaining the impact my cerebral palsy can have on my life. It's been really eye opening for a lot of people I've shared it with.
posted by aclevername at 10:48 AM on August 23, 2010 [2 favorites]

mcdmiijo: I left my last job because they refused to provide adequate climate control and our office being 90 degrees was sucking all the life out of me.

Here's a spoon example: a couple weeks ago I shot a music video. The prep days and the shoot day all went swimmingly, as far as those things go. But I spent pretty much the whole week after laying in bed, sleeping 16 hours a day.
posted by jtron at 10:50 AM on August 23, 2010 [3 favorites]

I appreciate the improvised nature of the original encounter in the diner, especially the physical demonstration. I appreciate the idea being conveyed, that ordinary things become true obstacles, that it's awful and tiring and endless to live through that daily. I appreciate the difficulty of life with any disability, visible or not, or at least I think I do.

But... why spoons? I just... the metaphor doesn't seem to hold up outside a restaurant.
posted by maryr at 11:24 AM on August 23, 2010 [1 favorite]

Because if you tell people you're almost out of bullets they look at you funny, and if you say you're running low on gas they either tell you to eat more beans or ask if you're a robot
posted by jtron at 11:44 AM on August 23, 2010 [8 favorites]

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

this is the history of my life. i have the double whammy of not only having to live with chronic illnesses and an "invisible" disability, but also have a child who inherited some of my illnesses and has them even worse.

my son, after reckoning all the hoops we had to jump through for him to have a "normal" sleep-away camp experience, slumped his body into a chair and with a sob said, he was a loser because he couldnt stop and not think for one day about everything that could kill him. what chronic illnesses can do to your self-esteem, even from a young age, is really something. i told him that our illnesses just made us better at logistics and strategy since we always have to be 10 steps ahead of everybody.

When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

my son and i have never lived lives in which we never had to worry about potential asthma and anaphylaxis triggers. i guess she has that memory. i honestly cannot think of a day in which i never had to keep in the back of my mind how fast we could get to an emergency room in case one of us were overcome by an anaphylaxis reaction.

thanks for the link to this site.
posted by liza at 11:55 AM on August 23, 2010 [3 favorites]

Spoons are OK, but it makes a lot more sense to me to just say "I'm out of energy". Talking about spoons would just seem pretty silly to some people who would rather be communicated with as adults, even if they did ask a seemingly (even childishly) stupid question, or expect something out of you that they shouldn't have. It would rather insult my intelligence to listen to someone explaining the spoon theory to me, rather than just saying that their illness causes them to run out of energy quickly, and I would feel like I was insulting the person's intelligence if I was the one doing the explaining.

Although I guess it's good to use as a last resort, and maybe that's what this thread is about in the first place.

I second the idea of picking something other than spoons, at least. Personally, I prefer the old standard, "I'm running out of steam."
posted by serena15221 at 12:05 PM on August 23, 2010 [1 favorite]

I have a friend who drives me up the wall. People she knows personally are the "good" disabled people. Casual acquaintances and members of the general public are lazy mooching freeloaders who are just making it up. Every time an ad for mobility aids comes up on the television I get treated to a rant about how it's just fat lazy people who use them and if these people would just bother to walk their own lazy selves around they wouldn't be so fat they need a chair. Oh, well maybe there's one specific person who's good enough, he really needs it. But those other people...

I don't need mobility aids, but those rants really bother me because I can't seem to penetrate her deep need to see disability as a moral failing. I just can't bring myself to ask her, "and if I weren't your friend, what would you be saying about me?"
posted by Karmakaze at 12:10 PM on August 23, 2010 [5 favorites]

oh, and i didn't write about my dyslexia (dysgraphia), because it is a topic that makes me want to cry all the time. in this country there is this crazy belief that dyslexia only happens when you are little and that somehow you can teach it out of somebody by the time you become a teenager or adult. and that if you claim to be dyslexic as an adult, you are doing so as a crutch because you are lazy or just sloppy.

i actually deleted a whole rant about this because it got too much; but yeah: to all the people who think adult dyslexics don't exist and are just lazy and sloppy people, FUCK YOU!
posted by liza at 12:17 PM on August 23, 2010 [3 favorites]

Spoons are OK, but it makes a lot more sense to me to just say "I'm out of energy"

I dunno, anybody can be "out of energy." And if people don't get that I (for instance) can be out of energy for reasons that I have no control over, it's very common for them to respond that I should a) sleep better, b) eat less sugar because that really made a difference for them!, c) try this supplement they swear by, d) do yoga, e) etc. Because they think it's the same for me as it is for them, whereas for me, while sleep, diet, supplements, certain kinds of exercise can help, they're not a fix, and missing some sleep or eating too much sugar isn't a cause.

I think one thing this metaphor can be useful for is modeling for someone who doesn't have the experience of it, what it's like to have to constantly aware of how much energy you have and don't have, what the price can be for overdoing it one day ("borrowing a spoon from tomorrow"), how unpredictable it can be. I mean to say, it seems useful for saying that there is some kind of line and some people live on the other side of it, and it requires a whole different way of thinking about yourself and how you plan your time, and so on. For visualizing it and quantifying it.

It's just spoons because she was in a diner with spoons around when the idea came to her. But why not spoons? They're just there to represent units of energy and how finite they are.

I mean, one of the points of the story is how it struck her friend that the writer is pretty much already out of energy when she wakes up in the morning. And then uses half her day's allotment just getting ready for work. How many people have to think about washing their hair and shaving their legs as two separate things that each take a unit of energy, instead up lumping them together under "take a shower," which is then lumped under "getting ready for work in the morning," which for people with no health problems (if I remember from my days of being one) is so much not a big deal that it doesn't even register.

A lot of people I know with chronic illness or chronic pain have found this story and the concept of the spoons to really resonate and be useful. Maybe, if you're a person who doesn't have that experience, it's worth paying attention to people who do.
posted by not that girl at 12:33 PM on August 23, 2010 [16 favorites]

Someone sent me that article a few years ago and it helped me out a lot. Not just with talking to people who didn't have to plan out their every move, but it also helped me be more patient with myself. It is no fun to constantly be castigating yourself for not being able to do all the things! like grocery shopping AND laundry AND dishes in one day, or whatever. Thinking about tasks in terms of how much energy they're going to consume made it a lot easier to make realistic plans about how a given day was going to work.

I agree, I think that's what so great about the article- it makes disabilities of this nature understandable to those without them. I don't have a disability, but I know how it is when I get overworked and tired, so imagining life starting with a small "number of spoons" helps puts things in perspective.
posted by ThePinkSuperhero at 1:13 PM on August 23, 2010

I've related my girlfriend's experiences with lupus here before, but I will always take an opportunity to get on the lupus awareness bandwagon. This is how she originally introduced her day to me:

What would you say about a disease that makes you as tired when you wake up as you were when you went to bed... every single day? Certainly that it's tiresome and annoying, right? Okay, what would you say if it gives you arthritis in your hips, knees and ankles so bad that even if you can muster enough energy to get out of bed, it is excruciating to walk to the bathroom? Sounds pretty nasty, doesn't it? Now, how about if I told you that when you finally make it to the bathroom, you have to pray you will be able to pee? Why? Because this disease also attacks the kidneys, in some cases causing complete renal failure.

This sounds like a horrible affliction. Well, wait a minute, I'm not through yet. What would you say about a disease that inflames the joints in your hands to the point you can't hold your toothbrush to clean your teeth? Or that it takes nearly twenty minutes to do something as simple as putting on your socks because every joint you use to perform such an easy task burns beyond imagination? This is beginning to sound like one mean, painful ailment you wouldn't wish on your worst enemy, isn't it? There's more.

What would you say about a disease that causes mucus membrane anywhere within your body to bleed uncontrollably without notice, and without fail? Nose bleeds, blood from your gums, your intestines or genitals... while you're driving in your car, or serving dinner to guests. What if every other day you look in the mirror and see the mark of the wolf or the butterfly, that telltale rash sufferers of this insidious disease know oh so well?

What if I told you it attacks the heart, the liver, the kidneys, even the brain... causes edema in the extremities, not to mention fibromyalgia and chronic fatigue? It's an auto-immune disease the causes the body to attack itself. Great fun huh?

Now, what if I told you that to look at this person, you would think they look wonderful, despite all this pain and suffering they endure each and every day?

Yes, lupus. It really, really sucks.

I've known her for ten years and she has been afflicted with lupus for nearly 20. She is a dear, dear friend who is charitable and giving, positive and helpful, but also miserable with everything I've described above. She suffers horribly nearly every day. There hasn't been a new drug for lupus treatment in nearly 50 years. It attacks mostly young, active women. When you're planning your charitable giving, if you could spare just a few bucks for the lupus organizations, it would be very meaningful to millions of women who are running out of spoons.
posted by netbros at 1:15 PM on August 23, 2010 [11 favorites]

desjardins , I cannot wrap my head around anything that you said in your comment. Is it really that much of an inconvenience to walk a few more yards?

This is obviously not the fault of the individual handicapped person, but I think it does lead to some generalized, though misguided, resentment of handicapped parking in general. Many people I know have commented on this, so I don't think it's just me.

Maybe it just your town and your friends who feel this way but I have never known anyone who has complained about this supposed issue. I have no resentment toward handicapped parking at all. Nor have I ever glanced longingly at an empty handicapped parking space and felt compelled to complain to my friends afterwords.
posted by futz at 3:28 PM on August 23, 2010 [2 favorites]

Thank you for making me count my blessings.

I like the spoon analogy, it really brings home how finite those energy reserves are. Those of us lucky enough not to be in that situation might be running low on energy after a sleepless night or a heavy meal or a long day at work, but we do something interesting, or get some fresh air, or do some exercise, or relax for a bit, and Boom! we've been handed a whole new handful of spoons, no charge.

I had never fully appreciated being one of those people until I read this on the bus this evening. I'd been planning to go for a swim this afternoon but was a bit weary. Went home, lazed about, then at 7pm thought "Fuck it, I'll go now," grabbed a bag, ran straight out the door onto a bus and in no time was having an unplanned dip in the sea. Counting my blessings. Thank you for sharing, and to everyone in the thread - wishing you spoons.
posted by penguin pie at 3:31 PM on August 23, 2010 [4 favorites]

I like it.

While I understand and even agree to some extent with the criticisms about spoons being an arbitrary and facile analogy for energy, there are advantages to having a unique metaphor.

First, when you use common expressions to express common experiences like tiredness, lack of energy, etc., people are more likely to give these expressions common interpretations.

Two, when you use the unique terminology of "spoons", it conveys that you understand not only the analogy (limited resource of energy) but also that you're talking about something quite different from the average healthy person's experience. You're talking about a chronic illness like Lupus, fibromyalgia, congestive heart failure, etc.

1. "Bob's running low on energy" (usual reactions: take 5, get some coffee, drink a soda, Bob needs to start working out, take multivitamins, get better sleep etc.)

2. "Kevin's running on his last couple of spoons for the day" (conveys: Kevin has a chronic illness and has nearly exhausted his entire pool of energy for the day).

Just think of the term "jump the shark". It sounds stupid (until you get used to it) and it also explains a concept that can be explained easily without a unique phrase. So why use it? Because it's an expedient way to convey a specific concept without being mistaken for more common, everyday criticisms about TV shows (or whatever).
posted by Davenhill at 4:53 PM on August 23, 2010 [3 favorites]

Yeah, in my understanding, I feel that the power of the "spoons" metaphor vs. just "out of energy" is the implications for the future. I figure, "I can't go to the party because I'm out of energy" means, "I'm too tired to have much fun at the party, and then I'll get to bed late and be kind of groggy and cranky tomorrow." Whereas "I can't go to the party because I'm out of spoons" means "I literally will not be able to get out of bed tomorrow if I go to the party." Or some other consequence that would seem extreme to a healthy person. It's a good shorthand for being able to say, no really, it's not that I'm too lazy to show up at your birthday party, it's that those hours at your party could literally ruin my ability to do anything for days.

Which is part of why I feel weird when the spoons metaphor becomes a shorthand for normal-healthy-person "out of energy." When everyone in a community is clued in, it is a great way to communicate that you just can't handle Activity X right now without anyone hassling you about it. They know that you are serious when you start talking about spoons. But it also seems to dilute the meaning when people with minor or no health problems start using the spoon metaphor for themselves. Is there anyone with some sort of chronic illness who would care to comment on this phenomenon? (Do people with the kind of health issues that started spoon theory feel warm and fuzzy when healthy people talk about running out of spoons because hey, they get it! Or do you want to punch them in the face?)
posted by mandanza at 7:31 PM on August 23, 2010

I've never heard a person who wasn't sick talk about spoons, and don't know how I'd feel about it. On one hand it's nice to be understood... but on the other, you're right that there's a difference between being temporarily out of energy (fixable with coffee or a nap or sleeping in a little tomorrow morning) and being genuinely not able to do anything else today without being worse for wear tomorrow and the day after and the day after that.

Thinking about it I would be more likely to look askance than to punch in the face, but I might try to explain the difference between being tired and being worn the fuck out the way that chronic illness wears you out. It's nice when people get it, but I am not sure that saying "I'm out of spoons lol" after a night on the town is really getting it.

Not even making an effort to get it is worse, though. In college I lived in a shared house with laundry out the back door and down a flight of stairs, and man, when you are running out of spoons those stairs really factor into the decision about whether it is actually necessary to have a clean shirt tomorrow, since it might mean not being able to make it to class. It drove me nuts when roommates would say stuff like, "I know how it is, sometimes I am too lazy to do laundry, too."
posted by bewilderbeast at 8:08 PM on August 23, 2010 [1 favorite]

The spoon thing was my first big "it's not just me" experience with regards to chronic illness. Also, mandanza, I think it's important to not lay down the law in terms of who is or isn't sick enough to use such a thing; I think the magnitude is important to keep in mind, though. Healthy people can be had-a-long-day tired, but they can also be just-got-off-a-transatlantic-flight-with-crying-baby tired, and running out of spoons is a lot more like the second one.
posted by mismatched at 8:11 PM on August 23, 2010 [1 favorite]

Also with spoons, try it. Get 8 or 12 or 13 spoons out of your utensils drawer and try it. Do the exercise. Don't just think about it. DO IT.

Find out what happens when you've spent all your spoons and you get up to get more and there AREN'T ANY.

If you're a healthy person thinking about the spoons as a thought experiment, it doesn't work so well as literally, physically working with spoons to try to count out what you get to do that imaginary day.

If you imagine it all then you think, but why not quarters or toothpicks or pills or sugar cubes or some resource like "energy" that you as a healthy person never run out of? But one of the reasons spoons work is that most households don't have more than probably 24 or 36 at most and in a restaurant you're likely to be able to only get 8 or so if you pillage a few other tables. That's about the right number to work with for this exercise.

So get the spoons out and try it out and try to empathize with a person who's only got 6 spoons. And don't cheat, and don't imagine that you have more than 6 or whatever number you start out with.
posted by kalessin at 9:19 PM on August 23, 2010 [3 favorites]

Thanks for the thoughts in response to my question. Bewilderbeest, I appreciate your thoughts, and sorry for the oblivious roommates. Mismatched, you make a few very good points. The thing especially about not laying down the law about who is sick enough is why I never have and probably never would call someone out for talking about spoons in a situation where I wouldn't. (Especially considering the original source of spoon theory. Telling people they don't look sick enough to use something from "But You Don't Look Sick!" would be some amazing fail. I was just curious about other perspectives for my own edification, mainly.)
posted by mandanza at 11:53 PM on August 23, 2010

I had chronic joint pain for most of my twenties (I thought it would last forever; thankfully it's now under control for the most part) and I only heard about the "spoons" analogy a few years ago. I immediately used it to explain to co-workers (and, crucially, my line manager) just how and why some days I could be full of pep and other days I could be slow and sluggish and other days I could be stuck at home. I did it with pens, being at work, but just the idea of having a limited supply of "task tokens" hits home in a way that saying, "I'm tired and in pain all the time," really doesn't.

Now I'm spending my thirties dealing with the gaping hole in my education and career left by how I coped with my twenties. (partly my fault for not seeking medical help sooner, and partly the system's fault for saying, "Oh hey, you're transsexual, right? Oh then I'm so not qualified to look at this chart; I'll get you an appointment with the endocrinologist in London for... let's see now... eighteen months' time. Here's some ibuprofen.")
posted by ArmyOfKittens at 12:52 AM on August 24, 2010 [1 favorite]

Spoons are okay. But I like the robot suggestion someone upthread made. I'd totally use that.

(And I apologize for making this my only contribution to this discussion).
posted by Harry at 9:08 AM on August 24, 2010

Another plus for using a metaphor like spoons is that someone with a chronic illness may simply not want to talk about their condition in direct terms on a regular basis. And that probably goes double for a lot of people around them. Because the term is a lighter and more oblique way of referencing a very serious issue, those involved may be able to reference it more often and more openly than they would if they were using more direct terms.

So again, while "spoons" may seem like a silly and arbitrary term (that was my first reaction, too), that's also one of its virtues.
posted by Davenhill at 10:29 AM on August 24, 2010

I was sent to read this shortly after my catastrophic medical event in late 2003. I have found it immensely useful in explaining why what used to take me mere hours to accomplish can now take many days. (OMG, I was SUPERWOMAN before I got sick.) It IS a silly sounding phrase and I've gotten some strange looks when referring to the theory in crowds. I was glad to see it again and posted it to facebook so many other friends and family could approach understanding.

there are almost always about 15 open handicapped spots, no matter what time of day or night I go. - Where do YOU shop? In Phx-Metro area, I often have to be dropped off at the front of a building because no open spots are available, morning or night.

I, too, have invisible disabilities that confuse those around me. I can go out dancing with the group on Saturday night. I am, however, spending all day Sunday and Monday recovering. Everyone sees me when I CAN do something, but no one is around when I have to crawl to the kitchen to feed myself later because I cannot even walk. Those Saturday nights I'm not at the club, it's because I cannot move already. On occassion, someone who does know what I claim to struggle with but sees me out and about offers strong doubts I'm as ill as I say. All I can answer is that I'd rather suffered physically to have some social contact than to remain isolated and housebound all the time.

As to the joke of Bathtub Bobsled's svelte figure, I get asked about once a month how I stay so thin, with a hint of jealousy underneath. "I'm very ill" tends to throw the questioner off on an awkward tangent. But it does provide me with some interior chuckles watching them struggle to find the next words.
posted by _paegan_ at 3:59 PM on August 24, 2010 [1 favorite]

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