Epistemic Injustice and Illness

In this blog post, Ian James Kidd (University of Durham and University of Leeds) and I, Havi Carel (University of Bristol), talk about our research on epistemic injustice.

Many of us are familiar with stories about doctors who don’t listen, large-scale healthcare systems that are impersonal and bureaucratic, and feelings of helplessness when trying to navigate these systems. In the UK these complaints have informed recent changes to healthcare policy, such as the NHS Patient Charter and the NHS constitution. But despite this greater awareness patients continue to voice concerns, which attest to persistent experiences of being epistemically marginalised or excluded by health professionals. Focusing on the epistemic dimension of these situations, we suggest that patients’ testimonies are often dismissed as irrelevant, confused, too emotional, unhelpful, or time-consuming.

We recently published a paper examining this phenomenon, which we call epistemic injustice in illness. In the paper we submit this problem to an epistemic analysis, using Miranda Fricker’s notion of epistemic injustice. In her book Epistemic Injustice Fricker argues that “there is a distinctively epistemic kind of injustice” which is a wrong done to someone in their capacity as knower. She identifies two such wrongs, testimonial injustice and hermeneutical injustice. Testimonial injustice occurs when prejudice causes a hearer to assign a deflated level of credibility to a speaker’s testimony. Hermeneutical injustice occurs when a gap in collective interpretative resources puts a speaker at a disadvantage when trying to make sense of their social experiences.

We suggest that these two kinds of injustice characterise many attitudes ill people encounter when they try to voice their opinions about their care, convey their experiences, or state their priorities and preferences. In particular we suggest that an ill person may be regarded as cognitively unreliable, emotionally compromised, existentially unstable or otherwise epistemically unreliable in a way that renders their testimonies and interpretations suspect simply by virtue of their status as an ill person with little sensitivity to their factual condition and state of mind.

We further argue that health professionals are considered to be epistemically privileged, in both warranted and unwarranted ways, by virtue of their training, expertise and third-person psychology. Moreover, they decide which patient testimonies and interpretations to act upon. We contrast cases in which patients are assigned undeservedly low credibility with cases in which patients’ credibility is undeservedly high. For example, the disorder Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) is not recognised by many physicians or considered a psychiatric (not somatic) illness. Patients suffering from ME/CFS may be assigned too little credibility.

Contrast this with Munchausen Syndrome (factitious disease), in which people produce or feign disease (e.g. by taking laxatives or wounding themselves) for complex psychological reasons. In these cases, patients take up clinicians’ time and are given considerable medical attention although the symptoms are feigned or made up. We show that these are two ways in which health professionals’ clinical judgement can be skewed as a result of assigning too little or too much credibility to patients.

Finally, we suggest that the structures of contemporary healthcare practice encourage epistemic injustice because they privilege certain styles of articulating testimonies, certain forms of evidence, and certain ways of presenting and sharing knowledge, e.g. privileging impersonal third-person reports, in ways that structurally disable certain testimonial and hermeneutical activities. To address this problem we propose that phenomenology, and in particular a phenomenological toolkit (see this), may provide a useful hermeneutic context within which patients, as well as health professionals, can reflect on and share their illness experiences.