Epistemic injustice in the age of evidence-based practice: The case of fibromyalgia

Abstract

The aim of this paper is to analyze epistemic interactions in healthcare practices. In clinical encounters, participants exchange and interpret knowledge. Patients suffering from fibromyalgia often report that healthcare professionals do not take their testimonies and interpretations seriously. Such experiences will be explored using the concept of epistemic injustice. Epistemic injustice is wrong done to someone in their capacity as a knower. In healthcare settings, epistemic injustice occurs when patients experience an unjustified discrediting as unreliable informants of their own illness experiences. First, we will argue that patients’ epistemic marginalization can be reframed as an epistemological problem. There is a gap between patients’ lived experience of illness and professionals’ conceptualization of illness as disease. This gap leads to two distinct conceptualizations, possibly causing harm to patients’ capacity as first-hand knowers. Second, we will analyze epistemic injustice in light of the dominant model of knowledge translation in medicine and healthcare, namely evidence-based practice (EBP). EBP intends to diminish the gap between scientific knowledge and clinical practice. EBP prioritizes knowledge obtained through clinical research over other forms of clinical knowledge and has the potential for harmful epistemic devaluation of patients’ stories.

Exploring invisibility and epistemic injustice in Long Covid—A citizen science qualitative analysis of patient stories from an online Covid community

“…Invisibility and epistemic injustice are not unique to any one illness yet can be linked with other diseases shown to have low ‘disease prestige’, 28 which are characterized by not being organ‐specific, do not have objective diagnostic signs and efficient therapeutic options are not always available. 12 Other invisible illnesses include fibromyalgia, endometriosis, depression, chronic pain and depression yet the most commonly associated with Long Covid is the similarity in experience to ME/chronic fatigue syndrome (CFS). 2 , 24 , 27 Qualitative research into the lived experience of ME/CFS has highlighted how dominant illness models are a barrier to the HCP–patient relationship.…”

“…The patient's testimony is vital to the consultation as there is no available epistemological authority from a biomedical explanation or test, yet clinicians can somatize these symptoms as seen in our analysis (blame deconditioning or stress) and downgrade the patient's credibility. This is epistemic injustice as described in the literature 12 , 31 and can lead to a climate of distrust as seen in the lived experience of Covid‐19.…”

“…11 Epistemic injustice occurs when patients experience an unjustified discrediting as unreliable informants of their own illness experiences. 12 …”

“…Within an era of evidence‐based practice Long Covid has been doubly challenging, for healthcare professionals (HCPs) working in a strained system who feel disempowered to provide answers, and for patients who feel invisible and are vulnerable to stigma and epistemic injustice 11 . Epistemic injustice occurs when patients experience an unjustified discrediting as unreliable informants of their own illness experiences 12 …”

What Patients Prioritize for Research to Improve Their Lives and How Their Priorities Get Dismissed again

“…Some are not viewed as credible knowers because of a negative identity and prejudicial stereotypes in healthcare [19], especially in psychiatry [20], but also in child and youth care [21], chronic illnesses like chronic fatigue syndrome [22], and chronic pain [23]. Patients' testimonials can be disputed, for instance, because they do not follow the medical model [24]. Professionals may also (mis)judge patients' intelligence, credibility, and rationality based on their language skills and discourse [25].…”