Naming Fatigue And Finding Relief
In the wake of my open letter to my new primary physician in part to explain the ways in which I need to process things and in part to express my concerns and fears regarding the instructions to try to push more exercise in the midst of the still-undiagnosed fatigue question, I note Jesse Meadows’ recent newsletter about fatigue.
It was based on the idea that CFS patients had an irrational fear that exercise would make their symptoms worse, which caused them to avoid it, thus becoming a self-fulfilling prophecy. Patients were immediately pissed about this, because it completely disregarded their experiences. It wasn’t an irrational fear — exertion of any kind caused their symptoms to get much worse.
It’s true, and I noted this in my open letter, that sometimes I have an exertion wall and sometimes I do not, and equally true that in the midst of not being able to maintain my daily walk I could structure a week such that it allowed me to go to Seattle for a baseball game. In other words, it’s not always true for me that “exertion of any kind” causes my symptoms to get worse, and I don’t know what that says about what my fatigue is or is not.
Discussing the excellent Sick and Tired by Emily K. Abel, Meadows notes:
Chronic illness threatens the power of medicine to cure, Abel writes, and this partly explains why people with chronic conditions have historically been shipped off to institutions, or else dismissed as fakes and liars. For over a hundred years, Americans have been taught to believe that every health problem — even cancer — can be solved through hard work and wise choices.
This in part is why I was so frustrated with the lack of response from my doctor’s office (or rather it’s dismissive one) when my doctor professes to believe in medicine as an instrument of social justice. Is it possible that I do not have ME/CFS? I assume so, although overall my symptomatology is consistent with a mild case of it. When I argue that psychotherapy, or indeed medicine, can either be put to social work or social control, this is sort of what I mean: is the goal to buttress the bootstrap myth and suggest I just don’t have enough stick-to-itiveness or is the goal to find the level of activity and effort at which my system will be able to maintain some form and fashion of equilibrium?
Although capitalism, particularly in this form, promises a cheap, sleek, efficient path to plenty and prosperity, it delivers instead a costly, privatized system based on impossible inputs in a finite natural and social world—so unimaginably cumbersome and irrational that it requires constant, vigilant, crisis-level maintenance from the scale of the microbial to the human brain to states, geopolitics, and beyond.
[…]
This socioecological violence is a constant norm of this moment for the vast majority of people on Earth, “an atmosphere of permanent insecurity,” as Fanon called it. “There is, first of all, the fact that the colonized person, who in this respect is like the men in underdeveloped countries or the disinherited in all parts of the world, perceives life not as a flowering or a development of essential productiveness but as a permanent struggle against omnipresent death.”
—Ajay Singh Chaudhary, in The Exhausted of the Earth
It’s with no small irony that I notice Meadows’ (rightfully!) dismissive reference to neurasthenia since longtime readers here will know that I’ve found the historical “illness” metaphorically useful given the freakish match between it being described in some quarters in terms of an overloaded electrical circuit and that being a comparison I’d begun to make in therapy to talk about the limits of my own nervous system.
“I don’t have a good name for my fatigue yet,” writes Meadows, “but I am learning how to carry it around nonetheless.” Me, I have an anecdatally-driven name for mine that as of yet does not have a medically-assigned counterpart, and its specific nature aside it’s been clear to me for some time that my life is one that requires a rather rigorous attention paid to the matter of resources versus demands even outside the context of avoiding autistic burnout specifically.
Me, on Bluesky, on Monday:
I would like them not only to save the Social Security Administration but also make it so that I’m not just perennially deniable for having had any kind of work history at all, even though it’s a limited one that was damaged by having been unknowingly disabled.
That work history—mostly fails of less than six months due to (unknown) disability, a thing in other SSA contexts known as Unsuccessful Work Attempts that don’t count against you—basically renders me “not disabled” for the purposes of applying for SSDI. It also scares off disability lawyers, who see the case as a lose and won’t even make the attempt, despite having written a “disability narrative” that basically makes the case for them.
The last time I applied, they administratively rejected me for reasons of “no new information” when I hadn’t yet even gotten to the part of my saved application that had new information. So what’s the point of even trying. And that administrative rejection? Unappealable, despite being before I’d even had the opportunity to submit the new information.
Honestly (my mother apoplectic will be), I don’t have it in me to try to scale that degree of administrative burden again, whose rules don’t even make sense and don’t provide avenues to point out that they don’t. It was grueling, and I get anxious and depressed and ideational just writing this. The entire process was one of effectively being told that you don’t have value as a human being, with not even a slight or even merely performative opportunity to argue otherwise. Why would I ever put myself through that again?
So, they win. Eventually I will have no resources and I will just go die. And all of that is even before Mine Furor and Phony “Swasticar” Stark get through with the SSA. Even a return to normal is an eventual death sentence for me.
At any rate, I had to sit down and write all this out before finally opening up my Kaiser messages to read the response to my response to their non-response to my open letter, which came on Monday, and as is usual for me and my conflict-averse rejection sensitive dysphoria I had to put it off until I felt like I had enough regulatory spoons to spare.
Sometimes the nurses try to help us with our messages and that is why you see the response from one of our nurses instead of directly from me. That is one of the aspects of our system to help with our many messages we receive each day. Thank you for sending me the message. It is helpful to hear feedback. Happy to chat more if you would like to schedule a follow up visit.
So, I did not complain about having heard from a nurse. I complained that the nurse’s response was not responsive, and did not indicate whether or not my open letter had been brought to my doctor’s attention, which were the things that were required. I’m less than thrilled with the immediate suggestion that I do not understand why I heard back from a nurse rather from my doctor, when I’m well aware of how this works, as I’ve been a Kaiser member for something like six years now. It’s difficult for me not to feel condescended to by the statement, “Sometimes the nurses try to help us with our messages.”
I am not a child who needs things in small and simple words just because I am autistic. I am a fully-formed adult human being who while financially dependent upon family both manages and lives his own life every single day and has done so for decades.
Mostly, this all just makes me feel even more tired, and less inclined to engage in the process of my own healthcare. I just don’t have the spoons to spare to have to lead people through the steps of talking to me like an adult person whose (per Meadows discussing Abel) “experiences [are] a valid form of knowledge”. What I provided to my doctor in the open letter wasn’t “feedback”. It was a plea to be seen and heard, as well as—literally, in its final paragraph—a plea for “clarity, clarification, or further context”.
Maybe I should be reading the above more generously, but it’s difficult for me to divorce any individual exchange from the larger context of my life. Yes, I’m invited to followup through another visit. I’m just not convinced it would be worth the effort, when I’ve already expended so much effort as it is, year after year since the inciting autism diagnosis, and there only ever seems to be more of it required of me, with no relief in sight coming to me at the end of it all.