Much of this No Before Times series has been grim. I have essentially laid out the following:
Flickr.com: Rafael Edwards
Healthcare is an industrial complex that is adversarial and not built for chronic illness.
The healthcare system is antagonistic to those who attempt to advocate for chronic illness care.
Self-diagnosis is valid, but may lead to further adversarial interfaces with healthcare, and/or generate reactive zealotry that undermines a patient’s long-term flexibility and resilience.
Engaging with healthcare when chronic illness symptoms change is fraught and can lead to damage.
Healthcare delivery has been undermined for decades and it is now completely crumbling under the pressures of the pandemic to a point where any need for healthcare is now, more than ever, likely to go completely unmet.
There are three common reactions to having to face chronic illness in yourself or in a loved one:
Raging denial
Righteous indignation
Pivoting acceptance
Raging denial is the oddest of human responses in my books because it is not just reserved for the healthy elite who can avail themselves of whatever healthcare service they deem necessary and have utter disdain for those who “whine about made-up nothings.” It is just as likely to be present in someone who is a) clearly very ill, b) has none of the money and influence to access healthcare services available to the nauseatingly wealthy, c) has clear 360° evidence that they are the utter losers of capitalism, and yet, d) ascribes agency to unseen evildoers who have purposefully blighted them with the illness and block their path to wellness. They maintain full raging focus on others being at fault to ensure no elements of the painful reality of being ill, and without any hope of a return to health, could breakthrough.
Not everyone stays entrenched in denial of course. Some, through first-hand experience with illness, discover that healthcare often does not restore health, dashing all pre-existing assumptions. Additionally, they discover that the assurance that the physical symptoms originate exclusively from psychological issues does not make that pronouncement true.
It has been interesting (and sad) to witness so many healthcare professionals, who have contracted COVID, realize that their rigorous denial of the existence of any post-viral syndromes were utterly false as they find themselves with mounting neurological, vascular and autonomic system failures.
At the other end of the scale is righteous indignation. Individuals in this group are painfully aware that the healthcare system is broken and failing. They are aware its failure has been ongoing for decades. They have first-hand experience as patients, family members of patients, or as direct care team members. It is a tough space because it endlessly cycles between driven advocacy and exhausted depression and cynicism. The trap is that there is a sense that it all might be fixed if only (fill in the blank).
It is a space that is well known to me. I focused on eating disorder treatment and remission on this site for years and cycled through advocacy and burnout multiple times. What I recognized at the time, but has become utterly undeniable during the pandemic, is that in an individualistic society, the appeal of eugenics permeates all facets of chronic illness. Most tragically, this eugenic philosophy is insidiously integrated into the thought processes of those with the chronic illness, and they become part of the raging denial that focuses blame on others for their decisions, choices and very state of existence.
Eugenics is the practice or advocacy of selectively mating the human species to further the appearance of desirable traits in the population, and by extension suppressing or denying the mating of humans that do not possess the desirable traits in question. Eugenic philosophy is broader in that it is not just about your potential mate status, but that it is reasonable to shun or excuse the marginalization and death of those who do not possess desirable traits, whether they plan to have children or not.
It is not just those in raging denial who wear down the righteously indignant. The system itself is a monolithic crushing force on any efforts for encouraging change either from within or outside the system (I have tried both).
And the ultimate injury to the righteously indignant is that they have a very thick frosting of denial slathered all around them as well. There is not much to distinguish those who are righteously indignant and those who are raging denialists except for the fact that the former has cycles of dour realization and the latter does not.
Pivoting acceptance is not pivoting to acceptance, but rather encompasses the fact that acceptance is a never-ending moving target and you work to move towards that target over and over again as it shifts.
Pivoting acceptance is not stoicism. It has elements in common, such as focusing attention on the things you can control and getting comfortable with the fact of your own death. But as we know much more about brain function today than back in 300 B.C.E., it is not possible, nor advisable, to suppress or discount emotional thought.
Pivoting acceptance is not some evidence-based approach to living a good life despite chronic illness. It is simply cobbled together by me from watching countess numbers of people with chronic illness navigate their lives as best as they can. Both raging denial and righteous indignation are energy-depleting ways of living and energy is a precious resource for anyone with a chronic illness (be it physical or cognitive energy).
There are some things you need to do to prepare for a life of pivoting acceptance:
Work on mental and emotional issues now
Rest
Critique and adjust your weltanschauung (veltan-shao-ung)
Obviously pivoting acceptance just builds on concepts already covered off in the series Enviraikido and Knowing and Nudging Terroir and what I am doing in this series is just focusing on some details on living as well as possible with a chronic illness in a declining civilization with an emphasis on the reality of that decline.
Next week we will look at working on mental and emotional issues, resting and critiquing your weltanschauung as well as how to orient towards the shifting aspects of acceptance.