ruminative mode: [health] On the Spoon Theory...
First things first: I am not trying to make anybody feel bad by what I say below. I am trying to work through my own thought process here, so any offense is purely unintentional.
ambelies linked me to a couple threads[1] by people I don't follow, speaking to the idea that it is cultural misappropriation to use the spoon theory if you are:
What is the Spoon Theory?
If you're not familiar with it, here it is from www.butyoudontlooksick.com in PDF form.
Long story short, the spoon theory indicates that a disabled person (in the example above, someone with fibromyalgia) has a limited amoount of energy/resources on any given day, and that that energy/resources may not be the same from day to day. Further, if one pushes through when the resources are low, they will suffer not only depleted resources, but may carry over that depleted resources issue into the next day.
The threads I saw yesterday said they feel it's cultural appropriation to use the spoon theory when able-bodied because when an able-bodied person says "I'm running low on spoons" all they need is a nap, but when a physically disabled person says it they mean they literally cannot push any further. They need to go home and have downtime as close to immediately as possible...and possibly until the next day.
They also said they felt it was appropriative of someone with mental disabilities to use the spoon theory because they aren't suffering physical pain, and that those who are disabled, particularly those with "invisible" physical ailments and complaints are experiencing a dilution of a term they use which they expect will result in them not being taken seriously -- again. (Fibromyalgia in particular has the stigma of "it's all in your head" for a lot of patients before it is properly diagnosed. Also true of Chronic Fatigue Syndrome, so that concern is not entirely without merit)
The first problem that strikes me with this idea is that "appropriate" comes off to me as defined in the dictionary, specifically:
Main Entry:
ap·pro·pri·ate
Function:
transitive verb
Inflected Form(s):
ap·pro·pri·at·ed; ap·pro·pri·at·ing
Etymology:
Middle English, from Late Latin appropriatus, past participle of appropriare, from Latin ad- + proprius own
Date:
15th century
1 : to take exclusive possession of : annex
2 : to set apart for or assign to a particular purpose or use [appropriate money for the research program]
3 : to take or make use of without authority or right
Pretty much taking something without the authority or right is one politeness away from accusing someone of stealing, one politeness away from outright saying "How dare you, what gives you the right, who do you think you are?!"
I've heard the able-bodied say that the spoon theory can be universal. I say "not quite."
I've heard the able-bodied say that everybody has limited energy and resources, so doesn't everybody have spoons. So I elaborate.
The able-bodied's spoons are different from the disabled's spoons. The threads that got me thinking make a differentiation even between the physically and mentally disabled spoons as well, hence the contention over appropriation.
An able-bodied person may be able to get up out of bed, use the bathroom, take a shower, wash their hair, get dressed, cook breakfast for themselves and family, drive themselves to work and start working -- all on one spoon. Things an able-bodied person takes for granted are things a physically or mentally disabled person cannot take for granted because a disabled person's resources and energy are consumed in different ways.
A physically disabled person may use a spoon just to get out of bed and use the bathroom. Then they need to ask themselves if they are able to use another spoon to take a shower, and will it cost them yet another spoon to also wash their hair, or can they do it this time? The getting dressed and the movement it involves may cost another spoon. Then there's the cooking of breakfast and the standing and moving and carrying required (not to mention the heat and cold involved [to say nothing of microwaving something less nourishing to save a spoon. Eating something less nourishing may cost a spoon later!]). That may cost another spoon. And then there's driving to work and facing the workday. A disabled person has to keep constant track of how many spoons they have left and weigh everything they do versus how many spoons it's going to cost them to do it.
So yes, we all have finite resources in the course of a day, but the way in which we consume them, and how the disabled must consider how they use theirs are different. So I can see how it might rub the wrong way to a disabled person to have an able-bodied person say "I'm low on spoons," because if they knock back a Red Bull, they are probably likely to be good to go for a few more hours. Or if they eat something and have a quick power nap, they are likelier to be able to keep going for the rest of the day. But when a disabled person says "I'm low on spoons", they mean they are running on fumes, and a Red Bull is not going to help enough to get them to the end of the day. A nap may help, or it may not because of medications required or of pain levels regardless of medication.
I do take exception to the idea that my disabilities don't all fit some people's ideas of disabilities that get to use the spoon theory to describe consumable and only somewhat renewable resources. I take exception to the fact that a person suffering depression can't count spoons because their difficulty with getting out of bed means "they haven't even opened the silverware drawer yet" if they're too depressed to get out of bed.
As someone who suffers 3 types of depression[2], I can tell you that it does cost me a spoon some days just to get out of bed. I can also tell you it is physically painful to be depressed. Look at the commercials for depression medication sometimes. They address that a mental ailment also has a physical pain component. So yes, I experience physical pain, and I am in mental and/or emotional pain that varies from day to day, mitigated by situations, and is worse during the winter or during shark week.
Moreover, as an introvert, I use up more spoons because of my line of work. As an introvert I am capable of being friendly, cheerful, and sociable, but it takes me more effort than it would someone who is an extrovert. I need downtime after a bit to recharge. Not only that but I have to be friendly, cheerful and sociable while doing problem solving and managing my tone and word choice. That's purely mental, but it also effects how well I'm able to cope and/or judge how many spoons I have left for the day.
So yes, some days I have to pick between eating lunch or sleeping through lunch and asking somebody to pick me up lunch when they leave the building which I then break company policy to nibble at my desk. And at the end of the day I get home too tired to cook some days.
As someone who suffers asthma, I can tell you that on days when my breathing is compromised, my energy level depletes faster as I struggle to breathe. Oxygen deprivation tires out the body that much faster. Bad air quality days are automatically lower spoon days for me. Extremely hot days are automatically lower spoon days for me. So if one of the other factors that affect my spoon count are also in play, I'm really going to have to be careful.
So yes, some days I have to stay in the building because walking to my car is enough to exhaust me to the point where I can't make the decision of whether to eat or sleep and I simply must sleep if I'm going to make it the rest of the way through the day.
As someone who suffers sleep apnea, I can tell you that even sleeping with my CPAP and getting more air while I sleep is not always enough to make sure I wake up with a full complement of spoons with which to face the day. And sleeping without the CPAP doesn't always mean a reduction in the amount of spoons I have.
As someone with bad ankles and a disk in my back that slides in and out of place as well as compressed vertebrae, I can tell you that some days the pain is so bad that I have to crawl to the bathroom. Standing up is out of the question, and even sitting is more effort than I can manage. I can tell you that some days I can push through it and keep moving but the energy it takes not to show the pain in face or voice means my energy will run out sooner.
Generally, I do not have the luxury of medication for the pain. I can take Tylenol which makes it less painful for a short time, but then it's dangerous to my body to take so many. I can't take Aleve at all because it doesn't work on me thanks to the blood thinners I take for my Hypertension. For the disk issue and the back spasms? I have a prescription for Flexeril. If I take it, chalk up the day. I have maybe thirty minutes of lucid consciousness left. Then I can't focus or concentrate enough to drive or talk or do anything other than sleep. I told my doctor this and she described a timed release version to see if it helped. It doesn't. Same problem. So that means most days I get up out of bed in pain, take my shower, feed myself, drive to work and spend a whole day at work in pain.
I know people who have other disorders that mitigate their energy level. Social anxiety people go into a physical clone of fight-or-flight and that's exhausting.
Do I do what I can to manage my health issues? Of course.
I'm on medication for the depression, and one of the side effects of said medication is fatigue. Damned if I do, damned if I don't, here; because not on meds, I would sleep all the time to avoid being self-destructive. Now I sleep because I'm tired all the time, no matter what.
I have learned to cope by making lots of rice and throwing some meat on top through the microwave on days I do have spoons so I have something to eat on days I lack enough spoons even to stand at the stove and cook. I know my body wants more protein and less sugar because sugar crashes kill spoons too, so I've adjusted my diet.
I stay inside on bad air quality days. If I have to go outside, I stay hydrated, and I wear a filter mask if it's really bad. I stay away from environments where smokers and/or allergens are likely to aggravate my breathing issues.
I elevate my feet to keep the back pain at bay as best I can. I lock my hair so I don't have to spend extra time doing my hair I could be sleeping, and I don't generally have to lift my arms over my head much. I get friends to help me when I wash it and need it twisted.
I tend to have trouble getting to sleep, so I'm setting up a wireless network so I can laptop from bed until my body is ready to let me sleep so I don't spend time tossing and turning and fighting to drop off.
I walk to increase my stamina and lose weight so the size of my body is less stressful on my heart and joints, and I have had to learn to cope with the concept that not every day is going to be a five thousand step count day. Some days I'll be lucky to mange 500 steps, and I should be proud of it no matter what.
I have learned to manage my emotional state so that I don't get angry or stressed out as easily as I used to. Rage, fear, anger, frustration and the like all consume spoons, and really that's energy I can't use frivolously. So I try not to let the emotions run away with me. Being on meds helps with that too, but not all the time. Sometimes I just have to remember "freaking out about this will not solve anything and it will use up spoons you may want for something else later."
Some of the people on the thread that got me thinking to the point of posting on my own LJ about it say that using the spoon theory for depression when people who are physically disabled use the spoon theory for physical pain level/energy level is like saying as a white woman they know what sexism is like so they know what racism is like too.
My feeling is that you may not have the identical experience between depression and fibromyalgia or sexism and racism, but the former are both ailments and the latter are both forms of oppression -- apples and oranges still have the commonality of being fruit that grows on trees.
My thinking is this:
Maybe a person with CFS has shiny silver soup spoons.
Maybe a person with Fibromyalgia has those durable wooden spoons used in kitchens.
Maybe a person with depression has metal camping spoons.
Maybe a person with depression with a pain component has tough, silicone spoons.
Maybe a person with social anxiety has those long thin sundae spoons for reaching to the bottom of the glass.
Maybe my spoons are big and wide ones. Maybe your spoons are short and deep ones. Can we both still eat metaphorical ice cream with our metaphorical spoons?
Seems to me we can.
So I don't see how my energy depletion issues dilute the significance of someone else's energy depletion issues just because pain is not necessarily always involved with mine.
[1] shadesong and spoothbrush respectively.
[2] Clinical depression, PMS depression and Seasonal Affective Order depression.
ambelies linked me to a couple threads[1] by people I don't follow, speaking to the idea that it is cultural misappropriation to use the spoon theory if you are:
- able-bodied
- not suffering from a physical pain related disability
What is the Spoon Theory?
If you're not familiar with it, here it is from www.butyoudontlooksick.com in PDF form.
Long story short, the spoon theory indicates that a disabled person (in the example above, someone with fibromyalgia) has a limited amoount of energy/resources on any given day, and that that energy/resources may not be the same from day to day. Further, if one pushes through when the resources are low, they will suffer not only depleted resources, but may carry over that depleted resources issue into the next day.
The threads I saw yesterday said they feel it's cultural appropriation to use the spoon theory when able-bodied because when an able-bodied person says "I'm running low on spoons" all they need is a nap, but when a physically disabled person says it they mean they literally cannot push any further. They need to go home and have downtime as close to immediately as possible...and possibly until the next day.
They also said they felt it was appropriative of someone with mental disabilities to use the spoon theory because they aren't suffering physical pain, and that those who are disabled, particularly those with "invisible" physical ailments and complaints are experiencing a dilution of a term they use which they expect will result in them not being taken seriously -- again. (Fibromyalgia in particular has the stigma of "it's all in your head" for a lot of patients before it is properly diagnosed. Also true of Chronic Fatigue Syndrome, so that concern is not entirely without merit)
The first problem that strikes me with this idea is that "appropriate" comes off to me as defined in the dictionary, specifically:
Main Entry:
ap·pro·pri·ate
Function:
transitive verb
Inflected Form(s):
ap·pro·pri·at·ed; ap·pro·pri·at·ing
Etymology:
Middle English, from Late Latin appropriatus, past participle of appropriare, from Latin ad- + proprius own
Date:
15th century
1 : to take exclusive possession of : annex
2 : to set apart for or assign to a particular purpose or use [appropriate money for the research program]
3 : to take or make use of without authority or right
Pretty much taking something without the authority or right is one politeness away from accusing someone of stealing, one politeness away from outright saying "How dare you, what gives you the right, who do you think you are?!"
I've heard the able-bodied say that the spoon theory can be universal. I say "not quite."
I've heard the able-bodied say that everybody has limited energy and resources, so doesn't everybody have spoons. So I elaborate.
The able-bodied's spoons are different from the disabled's spoons. The threads that got me thinking make a differentiation even between the physically and mentally disabled spoons as well, hence the contention over appropriation.
An able-bodied person may be able to get up out of bed, use the bathroom, take a shower, wash their hair, get dressed, cook breakfast for themselves and family, drive themselves to work and start working -- all on one spoon. Things an able-bodied person takes for granted are things a physically or mentally disabled person cannot take for granted because a disabled person's resources and energy are consumed in different ways.
A physically disabled person may use a spoon just to get out of bed and use the bathroom. Then they need to ask themselves if they are able to use another spoon to take a shower, and will it cost them yet another spoon to also wash their hair, or can they do it this time? The getting dressed and the movement it involves may cost another spoon. Then there's the cooking of breakfast and the standing and moving and carrying required (not to mention the heat and cold involved [to say nothing of microwaving something less nourishing to save a spoon. Eating something less nourishing may cost a spoon later!]). That may cost another spoon. And then there's driving to work and facing the workday. A disabled person has to keep constant track of how many spoons they have left and weigh everything they do versus how many spoons it's going to cost them to do it.
So yes, we all have finite resources in the course of a day, but the way in which we consume them, and how the disabled must consider how they use theirs are different. So I can see how it might rub the wrong way to a disabled person to have an able-bodied person say "I'm low on spoons," because if they knock back a Red Bull, they are probably likely to be good to go for a few more hours. Or if they eat something and have a quick power nap, they are likelier to be able to keep going for the rest of the day. But when a disabled person says "I'm low on spoons", they mean they are running on fumes, and a Red Bull is not going to help enough to get them to the end of the day. A nap may help, or it may not because of medications required or of pain levels regardless of medication.
I do take exception to the idea that my disabilities don't all fit some people's ideas of disabilities that get to use the spoon theory to describe consumable and only somewhat renewable resources. I take exception to the fact that a person suffering depression can't count spoons because their difficulty with getting out of bed means "they haven't even opened the silverware drawer yet" if they're too depressed to get out of bed.
As someone who suffers 3 types of depression[2], I can tell you that it does cost me a spoon some days just to get out of bed. I can also tell you it is physically painful to be depressed. Look at the commercials for depression medication sometimes. They address that a mental ailment also has a physical pain component. So yes, I experience physical pain, and I am in mental and/or emotional pain that varies from day to day, mitigated by situations, and is worse during the winter or during shark week.
Moreover, as an introvert, I use up more spoons because of my line of work. As an introvert I am capable of being friendly, cheerful, and sociable, but it takes me more effort than it would someone who is an extrovert. I need downtime after a bit to recharge. Not only that but I have to be friendly, cheerful and sociable while doing problem solving and managing my tone and word choice. That's purely mental, but it also effects how well I'm able to cope and/or judge how many spoons I have left for the day.
So yes, some days I have to pick between eating lunch or sleeping through lunch and asking somebody to pick me up lunch when they leave the building which I then break company policy to nibble at my desk. And at the end of the day I get home too tired to cook some days.
As someone who suffers asthma, I can tell you that on days when my breathing is compromised, my energy level depletes faster as I struggle to breathe. Oxygen deprivation tires out the body that much faster. Bad air quality days are automatically lower spoon days for me. Extremely hot days are automatically lower spoon days for me. So if one of the other factors that affect my spoon count are also in play, I'm really going to have to be careful.
So yes, some days I have to stay in the building because walking to my car is enough to exhaust me to the point where I can't make the decision of whether to eat or sleep and I simply must sleep if I'm going to make it the rest of the way through the day.
As someone who suffers sleep apnea, I can tell you that even sleeping with my CPAP and getting more air while I sleep is not always enough to make sure I wake up with a full complement of spoons with which to face the day. And sleeping without the CPAP doesn't always mean a reduction in the amount of spoons I have.
As someone with bad ankles and a disk in my back that slides in and out of place as well as compressed vertebrae, I can tell you that some days the pain is so bad that I have to crawl to the bathroom. Standing up is out of the question, and even sitting is more effort than I can manage. I can tell you that some days I can push through it and keep moving but the energy it takes not to show the pain in face or voice means my energy will run out sooner.
Generally, I do not have the luxury of medication for the pain. I can take Tylenol which makes it less painful for a short time, but then it's dangerous to my body to take so many. I can't take Aleve at all because it doesn't work on me thanks to the blood thinners I take for my Hypertension. For the disk issue and the back spasms? I have a prescription for Flexeril. If I take it, chalk up the day. I have maybe thirty minutes of lucid consciousness left. Then I can't focus or concentrate enough to drive or talk or do anything other than sleep. I told my doctor this and she described a timed release version to see if it helped. It doesn't. Same problem. So that means most days I get up out of bed in pain, take my shower, feed myself, drive to work and spend a whole day at work in pain.
I know people who have other disorders that mitigate their energy level. Social anxiety people go into a physical clone of fight-or-flight and that's exhausting.
Do I do what I can to manage my health issues? Of course.
I'm on medication for the depression, and one of the side effects of said medication is fatigue. Damned if I do, damned if I don't, here; because not on meds, I would sleep all the time to avoid being self-destructive. Now I sleep because I'm tired all the time, no matter what.
I have learned to cope by making lots of rice and throwing some meat on top through the microwave on days I do have spoons so I have something to eat on days I lack enough spoons even to stand at the stove and cook. I know my body wants more protein and less sugar because sugar crashes kill spoons too, so I've adjusted my diet.
I stay inside on bad air quality days. If I have to go outside, I stay hydrated, and I wear a filter mask if it's really bad. I stay away from environments where smokers and/or allergens are likely to aggravate my breathing issues.
I elevate my feet to keep the back pain at bay as best I can. I lock my hair so I don't have to spend extra time doing my hair I could be sleeping, and I don't generally have to lift my arms over my head much. I get friends to help me when I wash it and need it twisted.
I tend to have trouble getting to sleep, so I'm setting up a wireless network so I can laptop from bed until my body is ready to let me sleep so I don't spend time tossing and turning and fighting to drop off.
I walk to increase my stamina and lose weight so the size of my body is less stressful on my heart and joints, and I have had to learn to cope with the concept that not every day is going to be a five thousand step count day. Some days I'll be lucky to mange 500 steps, and I should be proud of it no matter what.
I have learned to manage my emotional state so that I don't get angry or stressed out as easily as I used to. Rage, fear, anger, frustration and the like all consume spoons, and really that's energy I can't use frivolously. So I try not to let the emotions run away with me. Being on meds helps with that too, but not all the time. Sometimes I just have to remember "freaking out about this will not solve anything and it will use up spoons you may want for something else later."
Some of the people on the thread that got me thinking to the point of posting on my own LJ about it say that using the spoon theory for depression when people who are physically disabled use the spoon theory for physical pain level/energy level is like saying as a white woman they know what sexism is like so they know what racism is like too.
My feeling is that you may not have the identical experience between depression and fibromyalgia or sexism and racism, but the former are both ailments and the latter are both forms of oppression -- apples and oranges still have the commonality of being fruit that grows on trees.
My thinking is this:
Maybe a person with CFS has shiny silver soup spoons.
Maybe a person with Fibromyalgia has those durable wooden spoons used in kitchens.
Maybe a person with depression has metal camping spoons.
Maybe a person with depression with a pain component has tough, silicone spoons.
Maybe a person with social anxiety has those long thin sundae spoons for reaching to the bottom of the glass.
Maybe my spoons are big and wide ones. Maybe your spoons are short and deep ones. Can we both still eat metaphorical ice cream with our metaphorical spoons?
Seems to me we can.
So I don't see how my energy depletion issues dilute the significance of someone else's energy depletion issues just because pain is not necessarily always involved with mine.
[1] shadesong and spoothbrush respectively.
[2] Clinical depression, PMS depression and Seasonal Affective Order depression.