Super Succinct Sunday – Spoonies

I literally just woke up about 15 minutes ago (I have not been feeling well at all) but I wanted to write this one ASAP since I know there is often a lot of confusion about what the term “spoonie” means, where it comes from, and why it is used. *Of course I had to carry on with my collection of continually comparable “christening” of posts in this alliterative way…!*

At any rate, for those of you who do not already know or who do not have chronic illness / are outside of the “chronic illness” sort of “community” (isn’t that a turn??? I’ll have to write about that as well!), the term “SPOONIE” was more or less termed by Christine Miserandino who devised the “Spoon Theory” as a means to QUANTIFY the unquantifiable – namely, the “something” those of us who have chronic illness, ESPECIALLY INVISIBLE CHRONIC ILLNESS (more on that later as well!), struggle with or lack in comparison with the average, “healthy, normal” person. I implore you to visit Ms. Miserandino’s website at the incredibly cleverly titled https://butyoudontlooksick.com/ – you can find the specifics of the spoon theory at https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
Basically, the idea is that “we” envision something like a person’s capacity to have “energy” throughout the day as “spoons;” most people have either an unlimited number of spoons (energy) they can use throughout the day, and if they start to tire or wear down, they can eat something or drink an espresso or take a short nap and that will boost their energy back up to a level at which they are functional. This, however, is NOT the case for those of us who face many kinds of chronic illness – and I do think this is often where my “issues” with some people within the “chronic illness community” arise … again, that is for another post! Basically, Christine Miserandino states that those of us with various types of chronic illness / chronic disease and disability are “given” a certain number of spoons for the day and we must allocate them to the best of our ability because unlike the ‘average” person, once we run out of spoons, we are done – i.e., we end up lying very sick hopefully near our beds at home or end up sick in the hospital, &c. Again, I do urge you to read the original version at her website because it is very good and very … emotional (at least it was for me when I first found it! It was like … YES! This is it!) – I will post it again here –
https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

So that is where the term “spoonie” and “spoonies” derived. I think describing the inability to recuperate energy or even have the same amount of energy as a “normal” person to begin with in some way that everyone can understand is crucial to having any meaningful discussion about chronic illness and what it is that we go through. Most “healthy, normal” people – even many people with various chronic illnesses! – do not understand what it is like to feel okay one day and then to wake up the next and feel like death slightly warmed over (some people have a problem with me utilizing that expression but I have been very close to death and fought very hard for my life many times so I have no problem using it – that is, very often, how I feel!) or like I have a severe case of the flu without the specific flu symptoms. I actually recently had one of my close friends apparently say something rather “nasty” about my chronic illness to another mutual friend – basically something to the extent of “well, I wake up not feeling well some days too and I still go out!” Those of you who face the same sort of “feeling” in relation to the “Spoon Theory” know that if we were to do that, we’d have to be carried back home or to (the) hospital by the end of the morning!

For myself, two of the most “trying” “regular” times of the day are 1. taking showers, and 2. eating. Both of these things take extraordinary amounts of energy / spoons from me in order to achieve and frequently I skip or skimp on them in order to save myself the feeling of absolute AWFULNESS I know I will experience if I finish them “properly.” Although I have “adapted” (that is, with a broken back and only one fully functional arm as well as severe degeneration in ALL of my major joints and spine) to showering by using a scrubbie on a stick and a loofah on a stick and I have combined my hair coloring routine and conditioning into one (if you don’t know about Overtone at – https://overtone.co/ – and you’re a crazy like I am and like colored hair – even subtly colored hair! – I HIGHLY recommend their products!), &c., showering STILL takes me quite a long time – about 30 minutes would be a “short shower” for me – and it is INCREDIBLY exhausting and pain-inducing (I need hot water, especially at this time of the year, but the heat CAUSES MY JOINTS AND BONES TO SWELL). Likewise, the act of eating in and of itself can totally wipe out the rest of my “spoon” supply for the day – sometimes the process of digestion is just too much for someone with an illness that has any sort of GI involvement (for me, especially the UPPER GI involvement because there are MANY times I simply will not even start to digest the food I have eaten for … far too long … and it’s NOT a pleasant experience). The whole process of actually MAKING food, especially HOT FOOD, or eating out at a restaurant is something of an impossibility for me most of the time (especially the latter two!) – I cannot TOLERATE the smell of other food and being in a confined space with so many food smells literally makes me sick.

Those are just some very simple examples that hold true for me almost always. Other “normal” things like brushing your teeth or hair or going to get groceries or run errands are other “common” examples. The idea of working an 8-hr-long day every day of the week (work week, at least) has often become so foreign to us because we just can’t function doing ANYTHING that long even on our good days. For me, if I were to go through the process of GETTING READY to go to school or to work even now during a “fairly good” time (in terms of my disease activity), I would be totally exhausted by the time I was “ready” to walk about the door – I would have no spoons left. That is what it is like, in some ways, to have chronic illness / to be a “spoonie.”

I hope that has explained the “Spoon Theory” and the term “spoonie(s)” for you! Many thanks for the theory and the assistance it has given to so many hundreds of thousands if not millions of “spoonies” to Christine Miserandino! I really hope you check out her website (again, https://butyoudontlooksick.com/). I have my own “take” on the spoon theory – it’s really more of a spin-off “theory” I suppose, but I will bring that up later. For now, I hope that has helped those of you who do not fight the fight “we” fight every day of our lives understand a little bit more of what we are going through and I hope it helps those of you who do fight that fight to be armed with something of a better “vocabulary” and means of discussing your illness and helping others understand what it is you are going through.

I would, as always, love to hear from YOU! If you struggle with something like not having enough energy to get through your day or you struggle with the feeling of just being terribly ILL (that is one I get a LOT – that and this feeling like I am being burned alive from the inside out – like I have a 104-105 fever or something …), I really would like to hear about it! What daily “tasks” challenge you the most? And how have you adapted to manage to do them anyway? HAVE you found a way to do them anyway? And what are the things that you cannot do now that you might have been able to do in the past? Those last few questions might seem like big downers, but I do think addressing these things head-on is really the only way we can even start to HOPE to accept them and therefore to accept our chronic illnesses and THEREFORE to move on with our lives! Thank you for taking the time to read this and all of my other posts and I hope you are having a happy and healthy day wherever you are in the world!

*AND NO, I HAVE NOT FORGOTTEN – MY HEART IS ALWAYS WITH YOU!*

❤ Always, Beth