1. They're mostly invisible, in that you can't just look at those of us who have them and know that we are sick. Sometimes we have mobility devices (like a cane or a wheelchair), but many of us don't. Sometimes we have symptoms that make us look like we might be sick, or possibly just drunk or hungover or strange. Specifically, there isn't any one *sign* you can look for that people know and say oh "oh, that person has fibromyalgia" or "this guy seems like he might have MS".
What this means is that we're constantly being put into the position of having to explain our illnesses to people, defend the fact that we really are sick and in need of that disabled parking tag or one of the few chairs offered at a social function etc., and we are often just totally not believed - sometimes even by medical professionals in the case of fibromyalgia and other illnesses that are not fully understood yet.
2. They do often overlap and/or are misdiagnosed with one another, so there a lot of people walking around with multiples of these illnesses and lots of people walking around with wrong diagnoses of one or the other. They all tend to be difficult to diagnose, and even more difficult to treat, which makes Everything about living with them more difficult - and therefore Everything about Life more difficult.
3. The reason they are often misdiagnosed as one another, and probably why they often co-exist as well (since fatigue and stress can lead to lower resistance to more illness), is because they share a few symptoms in common. Pain and fatigue being the main ones across the board.
And when I say "pain", I don't mean in the daily aches and pains way that most of you healthier folks immediately think of. I mean the kind of pain that you'd call an ambulance for if you suddenly woke up with it one morning. It's not only painful (duh) to live with constant levels of this kind of pain, but it's exhausting. It drains us of what little energy we have left. It screams at us when we try to push our boundaries to do something necessary (like a doctor's appointment) or fun (like going out with friends), so that we often just don't do those things or have to schedule everything else around them (and by everything else I mean showering, cooking a meal, doing a few stretches, etc.). Even without the added symptom of fatigue, the pain would be doing us in. But then we have the fatigue as well.
And when I say "fatigue", I don't mean tired. I don't mean sleepy. I don't mean worn out by a long day of work. I don't mean exhausted after that camping trip or hike or whatever. I don't mean sick and tired of dealing with that annoying relative. What I mean is the kind of fatigue you'd call an ambulance for if you suddenly woke up with it one morning. We live with these levels of pain and fatigue every day, and that forces us to make decisions about our daily lives very carefully and deliberately.
Hence, The Spoon Theory.
The spoon theory attempts to explain how the pain and fatigue (and other randomly awful symptoms that are more unique to each illness but also play a part) affect our daily lives. To summarize for those who don't feel like going and reading the whole thing (but DO if you CAN because it really does help!): we start each day out with a limited number of spoons. Every thing we do - even brushing our teeth or making toast - costs a certain number of spoons. When we're out of spoons - we're out and there's nothing more we can do that day, unless we borrow from another day (that's the pushing the boundaries part) and then we have less that day and have to make even more limited choices.
This is true for folks who are totally homebound and have to decide between brushing their teeth or paying bills one day all the way up through folks who are only mildly ill and can work a full time job and maybe even go out dancing after work Friday night but who will have to stay in bed all weekend afterward and likely call in sick to work the following Monday as well. No matter how sick we are, we all have to make these kinds of choices all day long and we're all hyper aware of those choices all day long.
Anyway, long point made short? The spoon theory speaks to us. Not just people who are sometimes tired. Not even just "disabled people" in general. But specifically to those of us who have invisible chronic illnesses. It describes, in simplistic ways, how a lot of us feel about living with our conditions. It gives us something simple yet effective to show non-sick people what it's like and it's actually helped a lot of chronically ill people get through to tough-headed loved ones, as well as really well-meaning loved ones who were trying unsuccessfully to understand. It's also given us a language to use with one another.
Community is an important part of relating within a marginalized group. And please try to understand here that those of us with invisible chronic illnesses are a marginalized group *Even Within The Disabled Community Itself*, which is already a marginalized group. I'm not saying that we're less privileged than other disabled people, just that our experiences are different and that we get marginalized in different and unique ways. We band together and understand each other's experiences on a basic level and need a language to talk about those experiences amongst ourselves and with others (allies, and even to a certain extent the folks who don't believe us and fight against us).
A BIG part of that language has become Spoons. We talk about being out of them, how we decide to use them, what it means to use one for one purpose and not get to use it for another, we offer to "loan" one another spoons as terminology for lending someone some strength through a difficult time, etc. It's something that all of us under the nebulous umbrella of Invisible Chronic Illnesses can understand.
There are, of course, terms and words used amongst more specific groups. We fibromites, for example, use "fibro fog" as a way to, often humorously, discuss a particular and particularly difficult to explain-to-people-who-don't-have-it symptom that includes cognitive difficulties, memory loss, and sometimes even a mild dissociative state. But that's just for folks with fibromyalgia. I don't know if folks with CFIDS or lupus or whatever have their own individual terminology, but I'd imagine they also do.
Spoons works for all of us. And I don't mean it works for all of us in that every single person with a chronic illness finds it equally effective, because some really don't. But for a lot of us it does, and it IS something we can all use and understand and it DOES help us bring what we talk about and understand amongst ourselves out into the rest of the world to get others to understand as well.
Okay, that's great. And it's great that it's worked as well as it has. It's great that a large number of people have heard the term and get it and can use it.
But it's also causing a problem.
It's the kind of problem that occurs a lot when one group of marginalized or minority people come up with a word or terminology or language that works so well for them that people catch on and then start using that word or terminology or language to refer to themselves in similar situations. It's called appropriation. And we've been hearing a lot about that word on the internets lately in regards to POC and racism, and it's great that consciences have been getting raised all over the place in that regard (mine included). But appropriation of a culture doesn't have to just be about race - it can also be about religion, geographical areas where people of the same race have a different culture, gender, sexuality, class, and yes, disability. I'm not trying to dismiss the importance of talking about and understanding the problems and issues around appropriation in regards to POC, because that's an incredibly important thing to be talking about and I'm so glad more people are right now. But it's not where appropriation begins and ends.
We've heard the terms "the disabled community" and even more specifically "deaf culture" and "blind culture." Well you know what? The spoon theory has helped to create a culture for those of us with invisible chronic illnesses - or at least it's given us some common terminology to use within the culture that was already forming. And it's important to a lot of us. It's important to have a community of people who understand, and it's especially important for us to have a language we can use to describe our experiences to others.
The problem is that appropriation of this term for other uses takes away the meaning for our community. When non-sick people use it to describe how they mete our their energies, it losses meaning for us. And it's not that we don't get that everyone, no matter how healthy and able-bodied they are, has to make choices on how they spend their time and energy. It's just that it's very very different for those of us with chronic pain and fatigue and other symptoms. And we NEED for people to understand that.
Because it's already difficult enough for people to understand that the pain we feel is as severe as it is and the fatigue we feel is not the same thing as a non-sick person's being tired, etc. - and because we're already sick to death of non-sick people comparing their daily aches and pains and tiredness at the end of the days with our experiences, and because the spoon theory was helping us to get our points across that it's DIFFERENT for us - it's all the more galling to have the term turned around and used for other purposes.
Now, I understand that it's a really helpful metaphor for lots of things. Recently, I've noticed some POC using it to describe their frustration and exhaustion and pain around dealing with RaceFail and generally racism in general and how fatiguing and painful it can be for them to deal with that. And on the one hand, it's interesting to see the metaphor used in that way because it does help to show just how incredibly painful and exhausting that process must be for POC in the anti-racism fight (or even just POC trying to live their lives with all the racism around them). And while I can't get that on the level of actually knowing what it's like to be a POC in this world, when that metaphor is used it helps me to get it in certain ways because it's using a metaphor that describes my life and it helps me to more easily apply my own experiences of pain and fatigue and fighting to be understood and believed and etc...
On the other hand? It's really frustrating for me to see the term co-opted like that. Because while I can see what the similarities must be - it's still Not The Same Thing. And if we, as invisibly chronically ill folk, had lots and lots and lots of widely used terminologies and languages to use to describe and define our situations to ourselves and other people - I'd be fine with sharing. But we really just have THAT ONE. And it's important to us. It's important to me.
It's important to me that when I talk about my spoons, people can nod and at least somewhat get what I'm talking about. That I'm talking about how hard it is to figure out how to spend what little energy I have every day on just getting the simplest of things done. That I'm talking about how going to visit with family for a few days means I'll be practically spoonless for the next month. That I'm saying that, while you non-sick folk might have to be *this* much careful about how you spend your energies, I have to be *T.H.I.S.* much careful about it. That yes, while it might seem that I'm obsessed with my health and that's kind of a downer, it's an absolute necessity for me because Every. Single. Fucking. Thing. I do Every. Single. Fucking. Minute. Of. Every. Single. Fucking. Day. has to be weighed carefully so that I can just function enough to be able to take a walk around the block to fight off atrophy or whatever. It's important to me that people get that.
And when the term is used for other purposes it lessens it's affect for MY uses. For MY community's uses. And we're already a community that is largely ignored, even by our loved ones, even by others in the disability community, and even by medical professionals who are supposed to be helping us. Having the spoon theory to use actually helps me keep more spoons for myself because it's less explanation I have to give all the time, and it helps remind me that I'm not alone in this. I need it. I need for it to keep being about me and people like me. I need for people who aren't like me to understand that.
I can understand why people who are both a part of my community AND part of another marginalized community might use the term to explain their dual (or triple, or whatever) experiences. That having to fight racism or heterosexism or something else or a combination thereof on a daily basis (disability is not my only non-privileged state but it's the one I fight most actively) would be extra exhausting for someone who is also chronically ill. That fighting those other things as well would, in fact, take extra spoons away. And I have no problem with it being used in that way - because that's how it's supposed to be used.
The problem, for me, is when people either use the terminology when they are NOT chronically ill to describe how whatever fight or other things are affecting them, or when someone who IS chronically ill is using the terminology for both but is still using the terminology to describe the other fight/struggle/experiences instead of how their chronic illness and these other things intersect and how the fight is taking their spoons away *because* they are also chronically ill.
It might be a fine line, but I'll tell you why it's important. Because even if those of us who ARE chronically ill start using the terminology for stuff other than how our chronic illnesses affect us daily, then other people will pick up on that and start using it for themselves (you know - EVEN MORE than they Already Are). And THAT is the problem.
To sum up:
1. We, the community of people with invisible chronic illnesses, need a terminology that describes just our experiences to use amongst each other and with the outside world.
2. That terminology, so far, is mostly The Spoon Theory.
3. The spoon theory has been great in getting the message across that our pain and fatigue and other symptoms make our daily lives very different from people who don't have invisible chronic illnesses.
4. People have taken the terminology and run with it.
5. This is great when it's being used to describe the experiences of people with invisible chronic illnesses.
6. This is problematic when it gets used for other things.
7. PLEASE STOP USING THE SPOON THEORY TO TALK ABOUT THINGS THAT AREN'T ABOUT BEING CHRONICALLY ILL.
8. Thank you.
[Edited to add: I want to also acknowledge that there are a lot of invisible chronic illnesses that don't necessarily fit in with what I'm talking about in this post, but that doesn't make them any less real or valid, or the issues in dealing and living with them any less real or difficult. They're just different issues than the kind brought on by chronic pain and fatigue and they also deserve to have good terminology and language and community and awareness and respect. Same for other disabilities that aren't illness-related. My point for this post is simply that The Spoon Theory, and the evolving language around it, is there for those of us whose lives are impacted by chronic pain and fatigue, and by the invisible nature of our illnesses, and it's important that the meaning of it be kept for us.]
