Many chronically ill people eventually learn about the “Spoon Theory” of chronic fatigue, which is basically a way to explain to healthy people what it’s like when you no longer possess (or never had) virtually unlimited mental and physical energy to do what you want. Because it’s always the responsibility of the weakest and sickest to explain ourselves to healthy people innit. A person’s spoons are a visual representation of their physical and mental energy reserves for the day, where a physical or mental activity “costs” one or more spoons to perform and when the spoons are gone the sick person has no choice but to stop acting and rest. With adequate rest and recovery time, hopefully their spoon reserves will replenish by the next day but that is not always the case. Many days, seriously ill people may have no spoons at all.
Spoon Theory was described and named by a chronically ill woman and it is pretty accurate in my own experience. For the first time in my life, after putting myself through law school, studying for and passing the bar exam, and then working more than full time in a stressful and demanding career in addition to a lifetime of “adulting” meaning maintaining a household and nurturing various parasitic males I no longer have anywhere near the energy I once had and can now barely get anything done, regardless of urgency or import. It’s not a matter of how important anything is anymore, nor how badly I need to or want to do it. I am not in control of that now and it is debilitating and terrifying.
Healthy people have no idea that’s even possible and they often refuse to believe it. And that’s an example of ableism, or discrimination in policy and practice against disabled people and in favor of healthy people. Young people seem acutely aware of the concept of spoons, chronic illness and ableism while older people seem to have not a clue; the implications of that are terrifying but I will leave that for another day.
I recently attempted to describe my own limitations to my mother, and even though as a nurse who claims to have rigorously studied the issues and thinks she knows everything there is to know about health, wellness and chronic illness (LOL) she had never even heard of “spoons” or spoon theory. Considering that that information is literally everywhere if one only cares to look, her research skills get an F. Her practical knowledge gets an F. Empathy F. Effort F. Fucks given on behalf of the chronically ill F. Fucks given about me and my new normal F. Decent human being D+. Maybe. Maybe there’s hope, I think to myself, and at least a D+ is better than an F in that department, although the D+ is likely generous. It’s a pretty important department and I like to think it matters but maybe it really doesn’t. Maybe there is just no way that healthy people will ever understand or care what it’s like to be seriously chronically ill no matter how decent they are but I decide to try.
I proceed to explain my limitations to a nurse, to my own fucking mother thusly: in a week’s time, in addition to fulfilling the basic survival needs of my business, myself and my 2 adopted shelter cats (procuring nutrition and toileting basically) I can maybe cook/prepare food 5 times, clean up the mess twice, and shower once. That means there are at least 3 times a week where I cook/prepare food and do not clean up the mess right away. Yes, that’s a thing that happens and no, there is nothing I can do about it. My mom responded by shrieking “bullshit! bullshit!” into my ear, as if that changes anything except to (more) completely alienate me and yes, to waste even more of my spoons. My mom is a garbage disposal for my spoons and causes extreme spoon deficit on the regular, or she will if I let her. And by “let her” I mean have any contact with her; I haven’t spoken to her in a year and a half, and very little in the past 7 years since I became seriously chronically ill and that’s why. After her most recent outburst and what it did to my spoons I think I could easily go forever without speaking with her again.
Then yesterday I came across a post by another chronically ill blogger who described her own experience with chronic fatigue in a unique way that despite my own extreme brain fog and forgetfulness generally, I will probably never forget. Michelle reads and comments here regularly (hi Michelle!) and has recently become a fulltime boondocker which means that she lives in wilderness areas in an RV all or almost all the time. Like most or all chronically ill people, Michelle is a “Spoonie” and suffers from chronic fatigue and has only so many fucks to give and so much energy to burn on any given day and while it’s not up to her how many spoons she has, it is kind of up to her how she spends them. Despite her “garbage can” diagnosis of ME/CFS she does the absolute best she can, as do we all, but in her case she has particular trouble using and maintaining her bulky and temperamental portable generator and cleaning up the dishes after she cooks and eats.
The really striking (and totally relateable) part of her experience, for me, was this:
Michelle often parks her RV in bear country and dirty dishes attract bears and she knows that. But still she cannot necessarily muster the mental and physical energy needed to clean the dishes right away and the task must be put off until the next day or possibly even the next. Get it? Now that’s some serious fatigue, and I (and she) don’t mean to say that she has any worse fatigue than any other chronically ill person. She may and she may not, how would that even be measured? Rather, I (we) mean that chronic fatigue is serious, it is seriously and unbelievably debilitating and in this post Michelle explains the reality of it so well. She cannot do anything more than what she can do, even
if when her life literally depends on it. And in her situation her life actually does depend on it.
Do you see what I am saying? The import and urgency of the task changes nothing, NOTHING about what she is and is not able to actually do. When her spoons are gone that’s it, and the only way she might have a spoon left over to do the dishes is if she never even cooked at all. Do you see the problem there? Because I do. She can either risk being attacked by bears or not cook (and therefore maybe not even eat) at all. From what I’ve gathered through reading her blog, Michelle will probably not decide to stop boondocking if she can help it and she has (actual, valid) reasons for that too, one of which being that boondocking gives her spoons, being in nature gives her spoons, and being peaceful and quiet preserves the spoons she does have. If she wasn’t boondocking in beautiful natural areas, maybe she would have even less spoons than she has now. Maybe she would have no spoons at all.
THAT is the fucking reality of serious chronic fatigue and all the cursing and shrieking and being berated by others in the world will not change it. It doesn’t matter how much you wish things were different. You no longer make the rules. The woman who gestated and birthed me does not make the rules. Michelle doesn’t make the rules. I don’t make the rules. If we ever made the rules we don’t make them now and there is no reality-based reason to think that we will make those rules for ourselves ever again. I would beseech healthy people to attempt to grok that, to please for the love of God grok that shit already but even that doesn’t matter! It doesn’t matter if healthy people grok it or not, or at least their understanding will not in itself make sick people’s material reality better or worse.
What will help, though, is if the people we rely on for comfort, companionship, conversation, money, shelter or whatever don’t waste the few spoons we have by demanding we explain shit, or destroy those spoons in the garbage disposal of their shitty shrieking ignorance. Now that would actually help. And by help I mean stop making it fucking worse. That is the reality of chronic illness and chronic fatigue and that reality cannot and will not be changed, or anytime soon, not until these serious, debilitating and fatiguing chronic illnesses are able to be treated or cured. That is not the case today where most chronic illnesses including the one I suffer from, Crohn’s disease, produce symptoms that can maybe be somewhat managed sometimes (and maybe not) but that is not the same thing as treatment and it’s hell and gone from a cure.
And on that note, I would like to leave a link to my Patreon and ask that my readers consider and pass along this most recent request for donations. Despite my symptoms and their all-encompassing effects on my life, I have made some progress towards getting disability and housing benefits, but it looks like I am going to need to buy myself more time (or have it purchased for me as it were). The game has now changed somewhat and with much (well, total) effort on my part, I now have additional medical evidence to support my claims, and my disability advocate has put me in contact with an organization that may be able to help: it’s an organization that helps autistic people maintain their independence and I am hopeful that they might actually come through. This whole time, it has seemed as if no one really cared about the Crohn’s diagnosis but now that I have an additional diagnosis of high functioning autism, my disability advocates seem hopeful that they now have something they can actually use. And importantly, they seem keen on doing some of the legwork to actually make that happen, like helping me fill out and drop off forms and such. That is huge.
In a nutshell, it is very important that I stay where I am for now and not lose this apartment which does take housing vouchers if I am approved for one. That means, as soon as I am approved I will start receiving rental assistance without having to wait for an eligible apartment to become available because I am already in one. It also means I will not have to move again, when the move I made last year nearly killed me and left me seriously depleted of spoons for an entire year. If I have to do that again, I literally very well may be unable to do it and if I can’t, it won’t matter that my life depends on it. Can’t is can’t when you are chronically ill. I know many of my readers know exactly what that means.
Thank you so much for reading and thank you for your support.