When we as a community say ‘this illness is biological’ or ‘CFS is not psychological’ or when we argue against theories of ‘MUPS’ or ‘somatisation’,
We are fighting for the right to be treated with kindness and compassion, to be given appropriate medical and other support, and to not be blamed. More than that though, what we are really saying is that we don’t agree we have the control being attributed to us. That if this debilitating disease state was ‘psychological’, we would do whatever we could to sort it out just to end the relentless suffering.
The real issue is this Cartesian dualism, the concept of mind and matter as separate, which relies upon a fantastical conception of the mind as some kind of floating omnipotent entity entirely separate from the body. (It also relies on a denial of the impact of environment, past experiences, and cultural pressures on physical health and emotional wellbeing). Such a mind is endowed with the complete capacity for free will, something which is not possible within the realms of science.
Logically this is contradictory: if we have total or even partial free will, which allows us to control our physiology with our minds, where does that leave the medical establishment? What is the point of the whole thing? And how is it even possible for a mind to function within a brain, but discrete from its biological realities anyway? At best it is a cause and effect program of infinite intricacy, much of which is created by genetics, in the womb and first 18 months of life.
When we say of any illness that it’s ‘just psychological’, we are banishing it from the realms of scientific measurement (and therefore medical assistance) and making the individual’s suffering entirely their responsibility, their problem to fix, their inadequacy and their mistake.
This is very convenient, not just to underfunded social services or medical facilities (liberalisation does not support those who cannot pay to play), but also to highly paid specialists for whom the problem outstrips their understanding and capacity. Rather than say ‘medicine doesn’t know, we can’t help, we’re sorry, here’s your $350 back’, they say ‘you’re somatising, you’re food adverse, you’re exaggerating, if you just exercise more you’d be fine’.
Rather than the physicians sitting with this inadequacy, the patients (the ones already suffering) do. The end result is a deep sense of failure, shame, confusion and frustration.
Yesterday, after overheating outside, turning blue inside, and using my arms more than I can safely do, I found myself very car sick. As we drove from the house we were leaving to where we would be staying, wave after wave of nausea washed over me. I found myself thinking ‘is this nausea caused by stress? What can I think about that will calm my body?’ I tried distracting myself, closing my eyes and meditating, focussing on counting, taking deep breaths, looking out the window at a distant point… and then I filled the hood of my fleecey jumper with projectile vomit.
I don’t get car sick and I definitely don’t puke—except when I ‘overdo it’ and trigger ME symptoms, the mechanism of which is mostly unknown. In this case, stressful thoughts may or may not have been the straw that broke the camels back, due to an intolerably high allostatic load which left no room for human error (or human emotions), but ultimately I just desperately wanted a sense of control over what can be tortuous (and seemingly unending) discomfort.
I fall into the trap of a dualistic approach when all physical means fail me. It’s easier to believe I can somehow fix this illness with my mind, then it is to sit with the sense of hopelessness that comes from just NOT KNOWING what is wrong, how to possibly make it better, or how to stop it happening again.
There is much unseen beyond the comprehension of the intellect. If anything, it’s not just ‘body and mind’, but mind body and SPIRIT. If the mind is real (lol), then the spirit is more real. As a third year psych student, I found myself in complete crisis after I realised that psychology could only be a science if the mind is a cause and effect machine—which leaves no room for free will, spontaneous change, spirit, or revelation which stems from the interconnectedness beyond the reach of our logical ‘mind’. Ultimately, I suspect there is a reality which will always remain beyond the capacity of measurement, due to the infinite variables. And this may be directly impacted by prayer, or reiki, or other woo woo, ra ra.
It’s possible that we create disease with our thought patterns, habits, and toxic programming stemming from adapting to a dysfunctional world, or from childhood trauma or neglect. We have different vulnerabilities which show up as gout, migraines, or leukaemia. The effect of toxic environments and toxic cultures is not discrete and saved only for those of us with ‘medically unexplained illness’. The ability to manage symptoms by exercising extraordinary restraint, diligence and spiritual fucking awakening is also not unique to us, and neither is the failure to do so.
If we didn’t have a known aetiology for cancer, biopsy to examine it, and chemo to treat it, we’d be telling cancer patients they need to stress less, eat better, micromanage their physical environments and time and exertion and nutrient intake. We’d be telling them that CBT was the only treatment and they better do it (even if it achieved little but wasting their time and money), and if they didn’t get better we’d leave them to their own devices. Our illness is only our problem to bear the weight of alone until science (and therefore medicine) can achieve dominance enough to confidently assume responsibility—and sell us a medication to match. Even if that medication comes with side effects and causes iatrogenic disease. Even if the knowledge doesn’t lead to vibrant health. Even if meds only bandaid and superficially alleviate the symptoms of underlying issues, which actually stem from generations of living in discord to what is healthy for human beings—caused by adulterated food, decimation of and war with the microbiome, disconnection from our communities, and a lack of entitlement to food, water, and a chunk of land to sleep on. Problems which take a lifetime or more to remedy…. or perhaps are just part of suffering as an inevitable component of the human condition. Not be a pleasant tone to end on, but possibly true; I wish this meandering train of thought had lead somewhere more uplifting.
‘And when the black thread breaks, the weaver shall look into the whole cloth, and he shall examine the loom also’.
We are banished from the (cold) embrace of modern medicine for the very reasons it is flawed, inadequate, and ultimately failing humanity as whole. It’s possible ME/CFS may be a keystone illness, one which when we understand will unravel the whole cloth, and lead to deep and systemic change.
We can only hope.
‘The phrase “it’s all in the mind” suggests that all we need do is change it. Change our mind and the problem dissolves. But such a view of mental phenomena is puerile. Our minds are not sovereign over themselves in these things. And the quicker we ditch that stale and exhausted canard the better.’