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A Bourgeois White Woman’s Disease

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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: ou
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The Limits of "Epistemic Injustice" in the Clinic

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Sick people often report frustration about their encounters with doctors: they report not being listened to, not being taken seriously, not being able to successfully communicate their issues, not getting answers to their questions, and more. In 2014, Havi Carel and Ian James Kidd published a paper where they analysed this phenomenon in terms of epistemic injustice. This paper has been enormously influential, to the point where it has become the main lens through which patient frustrations with their doctors is analysed today. In this blog post, I want to highlight some of the limits of this approach. The notion was introduced by Miranda Fricker in her 2007 book Epistemic Injustice . She defines epistemic injustice as a form of injustice that affects the subject “specifically in their capacity as a knower”. This is somewhat obscure, but the two subtypes of epistemic injustice that she defines help shed some light on the phenomenon she's trying to elucidate. Firstly, she discusses
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Sanism and the Psychologisation of Physical Illness

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People with myalgic encephalomyelitis (ME) usually react negatively to the suggestion that our illness is psychosomatic. Psychologisers often retort that our reaction originates in and reveals negative attitudes towards mental illness. Before examining this rhetorical device, we need to be clear on why people with ME actually resist the psychologisation of our illness. As I explained in a previous blog post , state and medical institutions together with insurance companies have controversialised ME: they have buried the unequivocal evidence that ME is a physical illness in an effort to avoid funding research into treatments, medical care, and social support for the millions of people disabled by ME. Their main strategy has been to fund, reward, and amplify the fraudulent research of a handful of psychiatrists arguing that ME is nothing but “false illness beliefs” held as a result of social influence in order to reap the supposed benefits of the “sick role”. The resulting widespread na
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Capital and the Controversialisation of Illness

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Myalgic encephalomyelitis (ME) is often called a contested disease. Although the suffering of people with ME is usually not called into question, at least not explicitly, questions are raised about whether this suffering is best apprehended through a medical lens. Medical professionals in particular often contest claims to the effect that the illness requires biomedical treatment. They regularly assert that no scientific evidence exists to support the claim that it has an organic basis, such that the symptoms are “medically unexplained”. Together with a handful of other illness, it is therefore termed a “disease of unknown aetiology” or “persistent somatic symptoms”. This suggests that their contestation of our disease is of a purely scientific, apolitical kind: it is simply what the evidence indicates. But for more than forty years, study after study has documented immunological, metabolic, neurological, and vascular aberrations in ME, such that the evidence for an organic basis to t
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Doctor’s Knowledge, Patient’s Knowledge

In the dominant collective imaginary, there is a sharp asymmetry between what a patient knows and what a doctor knows. The patient knows their own bodily experience. They know, in the terminology used to describe such situations, what their symptoms are. The doctor has all the rest of the knowledge: of the significance of these symptoms, and ultimately after tests only they know when to order and how to interpret, of the cause of the symptoms (usually referred to as “diagnosis”), the course the illness is likely to take (the “prognosis”) and the most appropriate treatment plan. We have, therefore, a highly asymmetrical situation where the patient and the doctor know strictly different things: just like the patient doesn’t have the knowledge required to accurately identify a cause, course, or treatment for their symptoms, the doctor doesn’t have independent knowledge of what the symptoms and, more broadly, lived experienced of the disease are. This conception of the knowledge dynamics a
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