A Bourgeois White Woman’s Disease
The person with myalgic encephalomyelitis (ME) is a woman. She is frail, weak, confused, and impressionable, and at the same time, she is unstable, confrontational, angry, and unreasonable: she cannot be reasoned with, she is emotional, she is neurotic. The life she leads is wrong in some way: she is a lesbian, she is unmarried, she is over-educated, she is a poet or artist, or if she is married, with children, she hates it, and regardless, she is unhappy, she drinks, she self-medicates, she struggles. She drains the resources of those around her, both financial and emotional, with her incessant needs, her endless demands for attention, her constant criticisms of everything and everyone. She is also rich---rich enough never to face housing or food insecurity---and she is white. She is a hysteric.
Much has been said about the way the ideological construction of hysteria has been wielded by state and medical institutions to harm bourgeois and middle class white women such as myself: our disease is controversialised, such that public funding into its pathophysiology is close to nonexistent, which results in the absence of diagnostic tests or approved treatments; so we are disbelieved, psychologised, abandoned to the “care” of our commonly abusive relatives, refused healthcare, denied disability benefits that would allow us to live, if not with dignity and independence, at least with some degree of autonomy; we are institutionalised, we are brutalised with forced exercise programmes that render our bodies so weak that we become bedbound, and finally, after we have been made to lose our capacity even to chew and swallow, we are starved to death by doctors who withhold feeding support. What interests me here is not to rehearse this well-trodden ground on how the misogynistic construct of hysteria harms those it directly targets, namely bourgeois white women. Instead, I want to look at how it harms those it does not seem, on the face of it, to concern: bourgeois white men, on the one hand, and poor people and people of colour, especially Black people, on the other.
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It is true that, like other immune-mediated diseases, ME predominantly affects women. Existing studies show that women comprise between 65% and 85% of people with ME. In this respect, ME is similar to MS, rheumatoid arthritis, and lupus.
White men with ME are usually better treated than white women with ME in the process leading to diagnosis. They are more likely to be taken seriously when they first present to the clinic with serious symptoms, and they are more likely to receive in-depth testing. But when the investigation reveals they have, not a legitimised disease, but ME, they begin to receive the same treatment as us. They suffer, just like us, from the state’s failure to fund biomedical research into treatment for our disease, and from insurance companies’ and state agencies’ refusal to reimburse the medications that help us manage our symptoms, or to pay out the disability benefits that would allow us not to depend so vulnerably on our ableist social circles. They suffer, just like us, from the specific form of ableism that attends controversialised diseases, on the part of doctors, kith and kin; the disbelief, the minimising, the psychologising, the incessant accusations of faking; and from the physical and sometimes lethal harm that people in the grip of this form of ableism, especially medical professionals, inflict on us.
It is interesting then that their status as men does not, on the whole, confer much of an advantage. Instead, when white men become sick with ME, they become marked for misogyny. It is because ME disproportionately affects women that it has come to be seen as a form of hysteria. In a famous 1970 paper, psychiatrists McEvedy and Beard, without having ever examined a single patient, concluded from the fact that the disease mainly affects women that it was a form of “mass hysteria”. This paper has served as the foundation for the state-funded controversialisation of the disease which started in the 1980s, and although current controversialising research no longer uses the term “hysteria”, it defends theories that are clearly inscribed in this lineage: that young women, often because of traumatic experiences, become convinced that they are sick, as a way to unconsciously manipulate those around them to care for them as if they were. This misogynistic research is the beating heart of the system of harm that people with ME are subjected: it is funded by the state in order to justify its abandonment of people with ME, and it is invoked by medical professionals in order to inflict both neglect and active harm of people with ME. In this way, bourgeois white men with ME become victims, among other things, of systemic and interpersonal misogyny.
Bourgeois white men, who are generally more used to wielding misogyny than to being subjected to it, often react in quite unhelpful ways to this state of affairs. Some downplay or even deny the misogyny at the root of the controversialisation of ME, and act instead as this controversialisation was an inexplicable and extraordinary evil. Others refuse to accept that they have ME, enthusiastically partake in its controversialisation, and claim to have an altogether different and incomparably graver disease such as for instance Long COVID. In both cases, they seek to make their own situation consistent with endorsing the world, broadly, as it is. For them, there is one and only one injustice, namely the one to which they are victim, and it does not have systemic causes, or exist in a broader landscape of intersecting oppressions. It is not the product of capitalism, misogyny, and as we’re about to see, racism, because that would require seeing these for what they are and recognising the social world as a whole as something that needs to be thoroughly changed. Instead, it can only ever be a fluke to be explained by some momentary lack of rationality on the part of those in charge who, for inexplicable reasons, are not responding rationally to scientific evidence and requests for help.
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Unlike bourgeois white men, poor people and people of colour rarely get their symptoms investigated when they seek help from healthcare professionals. Especially if they are Black, their pain reports often get interpreted as drug-seeking, and their fatigue reports as laziness; whatever their symptoms are, they are systematically minimised and seen as attempts to avoid work. Vox Jo Hsu explains that “the stock stories that inform medical encounters have traditionally cast women as fragile and neurotic and people of color as lazy, drug-seeking, or cognitively unstable.” In this context, a bourgeois white woman who presents with the symptoms of ME is likely to be read as hysterical and given an ME diagnosis. But a Black person who presents with the same symptoms is much less likely to receive such a diagnosis. Instead, they are much more likely to be brushed off entirely. The identification of ME with hysteria thus produces a state of affairs whereby ME diagnoses are overwhelmingly dispensed to rich white people, leading to an egregious underdiagnosis in people of colour populations: a recent study found that white people are five times more likely to be diagnosed with ME than people of colour.
Controversialisers have often explained higher rates of diagnosis among white bourgeois women by asserting that, unlike bourgeois white women who have the luxury of throwing years-long tantrums, poor people and people of colour usually have no choice but to work. Of course, this is nothing but a classist and racist ploy to invisibilise the suffering of poor people and people and colour, who, contrary to these pronouncements, are disproportionately affected by ME. A study led by Leonard Jason contacted nearly 30000 people at random in the Chicago area, to screen them for ME. The study found that ME was more common in Black people than in white people, and that it was twice as common in Latinx people than in white or Black people. It also found that ME was more common in working class (“workers”) than in middle class (“professionals”) people. Thus, contrary to what ME controversialisers have been claiming for decades, far from being a bourgeois disease, made up by white women to find an outlet for their neuroticism, ME is a poor person’s disease.
The construction of ME as a form of hysteria occludes this fact, and as with all things under the status quo, harms those already most marginalised the most. It is one (terrible) thing to have ME, and it is another to be deprived of an official diagnosis. In a climate where people diagnosed with ME are apprehended through the lens of suspicion at best and malingering at worst, and in a world where no approved treatments exist for the disease, this might not, at first sight, seem like such a severe form of harm. But this would be to ignore several things. Firstly, a formal ME diagnosis is often required for participation in cohort studies and clinical trials. One massive study intending to study the genetic factors for the development of ME required a formal ME diagnosis for participation, and ended up with people of colour making up only 3.3% of its participants. And if, at some point, a treatment for ME becomes available, the underdiagnosis of poor people and people of colour will undoubtedly contribute to the unequal access people will have to these treatments.
But more importantly, many of us have acquired baseline-preserving, baseline-improving, and sometimes life-saving knowledge from the community of people with ME; and many of us only knew to look for this community because of the diagnosis we were given by our doctors. Most people’s disease begins with a bewildering period, that can last years or decades, during which debilitating symptoms make no sense at all. This period is a dangerous one, for in the absence of knowledge about PEM (the possibly-permanent deterioration that occurs with overexertion in ME), people, encouraged by ‘common sense’ and their doctors, often push through their symptoms and thereby aggravate their illness. To have access to the ME community is to have access to the precious knowledge that PEM exists and must be avoided at all costs. It is also to have access to the knowledge that the community has produced over the years, about the medications and supplements that sometimes help some people recover some of their health. Finally, it is to have access to information about the factors such as new infections (including COVID infections and reinfections), mould, and so on, that can aggravate the disease considerably, and how to avoid them.
To be sure, the mere knowledge that PEM and reinfections are seriously dangerous, and that certain medications and supplements can help, can only ever be the first step in stabilising and potentially improving one’s health. All of these activities (avoiding PEM, reducing the risk of reinfection, minimising one’s exposure to mould, trialling a range of different supplements and medications) are extremely expensive and require a form of financial stability that only the richest people have. Racial capitalism, by forcing poor people and people of colour into perpetual exertion, by forcefully exposing them to pathogens, and by keeping them in a state of poverty that places most supplements and meds out of reach, makes poor people and people of colour sicker. ME, then, like so many other diseases, is a capitalogenic disease, and the struggle against the ME crisis must take racial capitalism as a central target.
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The construction of ME as a form of hysteria is well-documented and well-understood in our communities. It is well-understood that misogyny, including state misogyny, is at the root of the harm and abandonment of millions of women and men with ME. It is clear to many of that our portrayal as neurotic, weak, and unreasonable has been a major tool of ME controversialisation, and that the abuse and neglect we are subjected to by medical professionals and our ableist social circles can often we traced back to these conceptualisations. But what has been less clear, perhaps especially among the middle class white women who make up the majority of the community, is the way in which the ideological formation of hysteria has harmed those it does not seem, on the face of it, to target. The construction of ME as a form of hysteria has not only served to justify the state refusal to invest meaningfully in biomedical research on our disease, but it has also produced an egregious exclusion of people of colour and poor people from the disease population. Given how dangerous not knowing one has ME can be, the refusal to extend accurate diagnoses to those who are already most oppressed and most at risk of worsening is unconscionable.
This has implications for the shape our movement should take. We should not only fight for access to existing treatments, for the development of new treatments, for access to disability benefits, for access to safe healthcare, etc. (though we should certainly fight for all this), but we must also fight to ensure that everyone who meets the diagnostic criteria for ME gets an official diagnosis. This includes making these criteria widely known, so that people can self-diagnose, as well as pressuring the medical establishment to train its doctors to screen for, recognise, and diagnose ME. There are so many baselines to be preserved, so many lives to be saved, simply by ensuring good diagnostic coverage and accurate information surrounding diagnosis. Finally, recognising the assertion that ME is a bourgeois white woman’s disease for the lie that it is paves the way for understanding ME, especially its more severe forms, as the consequence of a racist capitalist order that forces workers, partly through overwork and partly through repeat infections, into pathological forms of exhaustion. It is crucial that we understand ME this way, as it really is, if we ever want to end the ME crisis.
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