Opinion An Ethics of Care, Relational Suffering, and Contested Invisible Disability, 2025, Christopoulos & Peter

https://link.springer.com/article/10.1007/s11673-024-10416-1

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An Ethics of Care, Relational Suffering, and Contested Invisible Disability

• Original Research
• Published: 13 February 2025

• (2025)
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Journal of Bioethical Inquiry

• Téa Christopoulos &
• Elizabeth Peter

Abstract

Suffering is an elusive aspect of healthcare, erroneously assumed to be located solely within the patient in the clinical encounter—an assumption that fails to acknowledge the pervasiveness of suffering endured by the physician.

This flawed perception is morally problematic in the context of treating contested invisible disabilities (CIDs), which are often associated with medical ambiguity and uncertainty.

In this paper, we argue for a relational reconceptualization of suffering in the context of CID to promote more effective care and improved physician-patient relationships.

We propose, through the lens of an ethics of care, that a relational ontology of suffering makes salient certain aspects of patient-physician relationships that co-produce suffering, such as professional incompetence, empathetic distress, and epistemic and hermeneutic injustice, rendering the experience of having and treating a CID more visible.

We then discuss the important implications of this understanding for this invisibly disabled identity and the therapeutic alliance between physician and patient and explore the potential of narrative-based medicine to better equip physicians with the knowledge, guidance, and skill to fulfil their ethical responsibility to care for and respond to not only the suffering of this population, but their own suffering as well.

 

One of the least helpful medical consultations I had was with an occupational health consultant who spent an hour telling me she understood how awful my life must be and how hard everything must be. I must admit I felt only frustration at her gratuitous empathy, exhaustion from her over sharing and annoyance that she made no attempt to address my specific circumstances.

(A profound contrast to the previous occupational health consultant I had seen who opened the session with ‘ME doesn’t exist so you’ve either got aids or are an alcoholic, which is it?’ I never found out why he picked these two arbitrary conditions over all the possibilities.)

As a patient I am not interested in the doctor’s suffering either way, I just want the doctor to listen, provide concrete suggestions if any are relevant and inform me if there are none. Obviously the doctor needs to find ways of managing their reactions to presenting conditions, though I am not sure how ‘invisible illnesses’ differ from other conditions such as MS or MND (ALS) where there are also no curative treatments just management strategies. I don’t understand why a ‘narrative’ is necessary; the doctor does what they can and doesn’t do what they can’t. Admitting the limitations of our current knowledge is much more helpful than any literary endeavours.