#LonghaulersUnite 3: Spotlighting Staminism

This one’s for the MEeps and the LoCos

Before you can tackle something, you have to name it.

Before sexism and racism were acknowledged as concepts, addressing these issues on an institutional scale was practically impossible. Witness the emergence into public awareness of homophobia last century and transphobia this century: until such behaviour was named, society could continue to pretend such injustice wasn’t happening.

Ableism is a term that has come to be associated principally with access and mobility issues and secondarily with slurs and patronising or even infantilising attitudes to those with visible disabilities. For me, ‘ableism’ does not (yet) encompass the span of egregious experiences the Sick have to endure.

The chronically ill need a word to draw attention to the disdain, discrimination and danger we are exposed to because of our invisiblised disability.

To be treated like you’re making this up, to be turned away from the ER when your heart rate is triple what it should be, to be forced to exercise despite potentially perilous consequences – this is abuse of the Sick at the hands of healthcare practitioners who have zero appreciation of their privilege as Well people with an infinite supply of metabolic energy. If there is a backpack of White privilege, there is also a backpack of Well privilege, and it’s stuffed full of spoons.

For the last few years, I have mostly been unable to read due to reduced capacity to both hold up a book and hold ideas in my head. I save my energy for writing whenever I can. So forgive me if I have missed publication of some conceptual theory that addresses this gap in language.

Last week, I was wrestling with options for the concept I’ve been grappling to express: ‘energism’ didn’t grab me (plus a ‘jism’ would never be taken seriously in the UK). ‘Capacitism’ or ‘chargism’ (as in ‘assumption of full batteries’) didn’t work either. ‘Metabolism’ was catchy, but a bit too left field?

In the end I settled on ‘staminism’.

The Well assume that those of us without physical, mental or emotional stamina are weak, when in fact we are managing to operate despite massive deficiencies in cellular metabolic capacity, brain chemicals or hormones. We are not weak, we are under siege.

A respected friend told me of our beloved Brianne Benness’ coining of the term ‘stabilism’ to highlight unfair public dismissal of conditions with fluctuating severity a.k.a. dynamic disability. It is vital to highlight that people who occasionally need mobility aids should be allowed to exist as ambulatory wheelchair users or to lie down without being accused of ‘faking’. In the face of the withering judgement of late stage capitalist society, we need this word to push back against an obligation to explain our symptoms or perform disability.

But alongside demanding recognition of disability-fluidity, there is a more pressing need for acknowledgement of limits that should not be routinely questioned because of the huge risks involved for Longhaulers. Quite apart from the sheer rudeness of telling someone “You don’t look ill” or that you “should” be able to do something, guilt-tripping Sick people into pushing beyond their energy boundaries can cause a serious deterioration of their condition. Staminist bullying can put the Sick at risk of becoming permanently bedridden, condemning them to a state of severe illness and constant pain the Well cannot even imagine.

* * *

We moved house on Saturday 4th June. Or rather moved truck. Emptied most of it out into this little holiday cottage by Fish Hoek beach where we’re going to spend the winter while Big Reg goes to the garage.

We are privileged to be able to afford help to manage the move. Sampson unloaded the roofbox with the assistance of muscleman Terry from Zim, a gardener with a degree in accounting. From 12-4pm, with a lie down in the middle, I packed stuff into boxes which my friend Marlene from Ocean View carried across the lawns to the cottage before unpacking them into cupboards. She lifted all the heavy stuff, like tins. But still, this was the first day for a very long time that I knowingly, inevitably, pushed myself beyond my limits.

It kicked in at dusk. Extreme PEM is such a bizarre reaction. Stage one was the onset of extreme pallor and an urgent need to lie down in the dark, accompanied by a feeling some describe as “fizzing”. For me, it’s like my whole body suddenly tips into pinball emergency mode: TILT!!!!! It felt like deep physical shock, with every cell clanging an alarm. Internally there was a sense of flashing lights, buzzing electrical shorts and high alert. As if my fight-or-flight mechanism had gone haywire and was pinging around inside.

My temperature started veering wildly – a sudden drop to bone cold followed by a hot flush, then my favourite combination: cold sweats, urgh. Even after eating a substantial meal, I immediately felt hungry again, as if my body was starved of fuel. Stage two is too-tired-to-sleep, though I’d gone way beyond exhausted. I felt so wired, I couldn’t reach deep sleep and only managed to doze, waking over and over through the night.

The next morning, even though I was hobbling like a pensioner and feeling grimmer than usual, I experienced a brief period of “Oh…maybe I got away with it?” But Longhaulers know better than to greet this false dawn. You still have to hold back, because it’s only 24 hours after the main exertion when the true consequences hit you.

In the mid-afternoon, I risked a 10 minute perambulation in the sunshine, got back and lay down straight away. When I tried to get up half an hour later, it was like concrete had been poured into all my limbs. Only then did I realise exactly what I’d done to myself. My spine felt traumatised; an iron spike into my skull. By this point my arms and hands were throbbing as if I’d been weightlifting all day yesterday, rather than transferring underwear into drawers and onions into the veggie basket.

‘Fatigue’ doesn’t really cut it.

* * *

In the early morning, I heard a podcast interview with Laura Bates, founder of the Everyday Sexism project, who has written a new book, Fix the System, Not the Women. She related how, in 2021, after the murder of Sarah Everard, police told women in the area not to go out alone after dark, and after the murder of Sabrina Ness, attack alarms were given out to women. Reflecting on this, Bates got a round of applause when she asked: “At what point are we going to stop talking about the women and what they should do differently, and look at the problem?”

When the challenge is framed as “violence against women” as opposed to “male violence”, it places responsibility for addressing it on the victim and not the offender.

I want to learn a lesson from Laura Bates’ observations and encourage us to leapfrog into a more empowered way to deal with our problem. In our case, we need to turn the spotlight away from the Sick and onto healthcare practitioners, medical insurers and government departments.

With all due respect to our hard-working ME organisations, what we need right now is not another showcase of paintings and poems about our suffering, but direct action to address the systemic bias that is denying us our right to healthcare. If we want structural change more than ‘thoughts and prayers’, we need a politically savvy campaign – not an art salon.

This starts with a definition of what is oppressing us. Staminism: an ignorant attitude that dismisses or belittles the painful energy-limited experience of the chronically ill. That fails to account for the impact of energy impairment on every single aspect of our lives. That condemns us as weak, when we are in fact Sick.

Shining a light on staminism throws into harsh relief the cruelty of clinicians who, contrary to updated guidelines from medical authorities on both sides of the Atlantic, continue to impose GET and CBT on vulnerable newly diagnosed post-viral patients.

With the pandemic unleashing a tsunami of Long Covid across the world right now, veteran Longhaulers owe it to the next generation of the Sick to set the tone as well as set the agenda. Respect isn’t a bonus extra during a public health crisis, but a fundamental. We should not be begging for attention but demanding our rights and our dignity. It is time to call out the staminist behaviour we will no longer accept:

It is staminist to imply the chronically Sick are ‘fakers’, malingering or undeserving – this is hate speech that vilifies us and enables abuse.
It is staminist to bully the Sick to push themselves beyond their energy limits.
It is staminist to prize productivity above the value of proactive rest.
It is staminist to expect the severely Sick to drag themselves to doctors’ rooms and pay for a 20 minute consultation with having to endure a week of PEM.
It is staminist to gaslight us about our symptoms or minimise our struggle and pain.
It is staminist to put us in hospital wards with bright lights, loud noises and overwhelming smells.
It is staminist to continue to insist, in the face of copious scientific evidence, that our illness is psychological.
It is staminist to continue to deny that our disease deserves biomedical research funds commensurate with patient numbers and the level of suffering.
It is staminist to threaten the severely Sick with forced removal to psych wards.
It is staminist to remove severely energy-impaired children from their homes with bogus diagnoses of MUS or Pervasive Refusal Syndrome and accuse their parents of Munchausen syndrome by proxy or FII.
It is staminist to deny the chronically Sick medical treatment and insurance payments.
It is staminist to make application for disability grants so arduous as to be inaccessible to those with energy impairment and compromised cognitive capacity.
It is staminist to dismiss and invisibilise our illnesses and refuse to count ME and Long Covid as disabling chronic conditions.

Perhaps it’s time for an Everyday Staminism site to record and make visible the scale of what the Well inflict on the Sick on daily basis, from micro aggressions to major abuse.

* * *

By Thursday, I was able to function more normally again. I was pleased I’d paced so well – four hours on my feet cost me only four days’ payback to get back to baseline, rather than a whole week. Of course, a cosy bedroom and the unseasonably warm climate-changey weather helped. (Sampson was able to go swimming without a wetsuit that Tuesday and was surrounded by a frolicking pod of dolphins!)

I felt I’d got off lightly.

I have debated long and hard with myself about including this last section.

I woke up with the word “Staminazi” in my head. Whoa, I thought, that brings a whole new spin to Arbeit macht frei. But I didn’t want to be responsible for putting that word out in the world – even if those who continue to insist on pushing the false narrative of Freedom through Exercise deserve to be seen as dangerous fanatics forcing those with Long Covid to risk becoming as permanently disabled as those of us with severe ME.

But then I read an incisive blog by Professor Brian Hughes about a new book by Fiona Fox, head of the Science Media Centre, a propaganda arm of the Very Important Psychologists from the Royal Colleges. In it, Fox devotes a chapter to “The bitter row over ME/CFS research” which she prefaces with – take a deep breath of chutzpah here – an inscription from the Holocaust Museum, part of the poem by Pastor Martin Niemöller which begins “First they came for the Communists…”

Prof Hughes concludes:
The implication is that ME/CFS patients (and their advocates) who deign to object to medically obsolete treatments are, in fact, sinister malefactors aiming to overthrow the healthcare system by incrementally purging it of innocent doctors who just want to administer CBT. You know, just like the Nazis.

(Pause to facepalm…)

Prof Hughes states that “The hyper-privileged always seek to deflect criticism by casting aspersions on their adversaries” and draws a parallel between the “two deeply hierarchical professions” academia and medicine, and other conservative groups “where dominant seniority frequently stands in the way of progress”:

In defending their naked protectionism, these medical conservatives have adopted all the usual scare tactics deployed by right-wing hysterics. They have complained that they are “being silenced,” shamelessly adopting the standpoint of the oppressed and marginalised. They have accused those who criticise their bad science of being “activists,” as though they are being targeted by an organised conspiracy.

(N.B. Adam Lowe also reviewed Fox’s book, with a plethora of calm facts and stats from his time serving as an ME patient rep on the NICE treatment guidelines committee, with an emphasis on the oversight and integrity of the process.)

And most recently, they have leaned fully into right-wing paranoia. They have completed the Bingo card of the conservative persecution complex. Utterly succumbing to Godwin’s law, they have decided to imply that their adversaries are actual Nazis.

Godwin’s law states that, as an online discussion grows longer, the probability of a Nazi analogy increases to certainty, but also traditionally holds that whoever first brings an hyperbolic comparison to Hitlerism into the debate automatically loses. Barrister Valerie Eliot Smith for one thinks the ME community may have basis for a defamation suit.

Personally, I don’t think such a comparison is appropriate under any circumstance (although I hold up my hands to deserving the occasional tongue-in-cheek application of the phrase grammar nazi). But if the BPS lobby is bandying analogies about, let us weigh the evidence:

To whom is a Nazi label more appropriately applied?

Is it to the millions of ME ‘activists’ unable to stand up, let alone march and protest, who are trapped in solitary confinement in our beds because stigma and systemic neglect since 1970 has led to a disgraceful absence of research to free us from our suffering?

Or:

To the members of the Royal Colleges who initially refused to accept the democratic conclusions of the joint committee conducting the 3 year review of NICE ME/CFS treatment guidelines? Who continue to utilise such unscientific propaganda to maintain their monopoly over the field?

To the psychologist who, in the early 2000s, signed off the brutal and fatal sectioning of Sophia Mirza? To the Very Important Psychiatrist who, in the 1980s, approved leaving 12 year old Ean Proctor to sink in a swimming pool when his mother described him as “in a wheelchair, he couldn’t speak, his hands were in tight fists. He was all skin and bones—he looked like something out of Belsen. How could he do anything?”

To the Lewisham Hospital doctors who, in 2019, insisted that 17 year old Jehan ‘Gigi’ Joseph-Garrison was not physically but psychologically unwell and forced her to engage in harmful exercise therapy despite her being so frail as to be “close to death”? A process her mother Dionne – an experienced clinical psychologist herself – has described as “almost torture”.

Is Staminazi too harsh a word for those who have deliberately stymied biomedical research funding for post-viral illness and left the Very Severe imprisoned in the dark for decades?

British teenager Gigi Joseph on holiday in Norway before she became ill

Gigi in hospital in 2019 (photo included with her permission)

American photographer Whitney Dafoe, aged 21, before falling ill in 2004

Whitney has been bedridden since 2012. This photo is from his blog Alone Together April 2022

May this winter solstice be the lowest point for the Longhauler community.

May our rising light reveal the scourge of staminism.