Striking the balance with epistemic injustice in healthcare: the case of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Abstract

Miranda Fricker's influential concept of epistemic injustice (Oxford University Press, Oxford, 2007) has recently seen application to many areas of interest, with an increasing body of healthcare research using the concept of epistemic injustice in order to develop both general frameworks and accounts of specific medical conditions and patient groups. This paper illuminates tensions that arise between taking steps to protect against committing epistemic injustice in healthcare, and taking steps to understand the complexity of one's predicament and treat it accordingly. Work on epistemic injustice is therefore at risk of obfuscating legitimate and potentially fruitful inquiry. This paper uses Chronic Fatigue Syndrome/Myalgic Encephalomyelitis as a case study, but I suggest that the key problems identified could apply to other cases within healthcare, such as those classed as Medically Unexplained Illnesses, Functional Neurological Disorders and Psychiatric Disorders. Future work on epistemic injustice in healthcare must recognise and attend to this tension to protect against unsatisfactory attempts to correct epistemic injustice.

Epistemic in/justice in patient participation. A discourse analysis of the Dutch ME/CFS Health Council advisory process

“…In assessing these patient participation discourses, this paper builds on a corpus of literature that help to understand the analysed documents and their contextualization (o.a. Blease et al, 2017 ; Byrne, 2020 ; Fricker, 2007 ; Jutel, 2009 ; Persad, 2017 ; Sulik, 2011 ). 2…”

“…Testimonial injustice occurs when someone is deprived of her/his credibility due to unfair identity prejudices (Fricker, 2007 ). Such unjust positioning amounts to, for example, groups of certain disdained genders or ethnicities, or – relevant to this paper – to ill people whose testimonies are dismissed or seen as less valuable by virtue of being negatively stereotyped as ill persons (Byrne, 2020 ). Hermeneutic injustice, moreover, renders someone unable to even articulate and give meaning to her/his experiences, much less communicate them to others (Fricker, 2007 ).…”

“…These people are also at risk for suffering from hermeneutic injustice. Since people who are ill are often reductively represented in public life – or not represented at all –, they only have inadequately developed interpretative resources available in order to understand and make sense of their subjective illness experiences (Blease et al, 2017 ; Byrne, 2020 ; Carel & Kidd, 2014 ). In the case of ME/CFS, these two injustices seem closely linked and work to sustain each other.…”

“…As these people are stereotyped as imagining their symptoms, it may deflate their credibility through which they may have trouble accessing realms wherein knowledge is produced. This kind of exclusion in knowledge production settings may lead to a lack of appropriate shared resources about the illness and, consequently, to people finding it hard to understand and communicate their subjective ME/CFS experiences (Blease et al, 2017 ; Byrne, 2020 ). Then, when these hermeneutic gaps are interpreted as correlating with an in/capacity of ill people as knowers, it may, again, decrease their credibility and lead to testimonial injustice.…”

The Predicament of Patients

“…A vigorous body of recent scholarship has confirmed and developed our proposal that there are distinctively pathocentric epistemic injustices. Recent work has described the epistemic injustices that track persons with chronic somatic and psychiatric illnesses (see, for example, Blease, Carel and Geraghy, 2016; Byrne, forthcoming; Crichton, Kidd and Carel, 2016; for a full list, see footnote 2). In a sense, what is being confirmed is what was being said all along in so many illness narratives, including Lorde's criticisms of ‘tyrannies of silence’.…”