[Pubmed] It's you it's about! Exploring existential aspects on quality of life with myasthenia gravis

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Med Health Care Philos. 2025 Dec 26. doi: 10.1007/s11019-025-10320-4. Online ahead of print.

ABSTRACT

This article is grounded in a phenomenological and autoethnographic approach, with the neurologist's remark, It's you it's about!, serving as an existential starting point. The aim of this text is to explore quality of life as an existential challenge and opportunity when living with the chronic illness myasthenia gravis, drawing on lived experience and existential philosophy. Through three existential anecdotes based on the first author's experiences with myasthenia gravis, the tension between the body's limitations and the patient's desire to continue living meaningfully, as well as the role of the clinician in supporting the patient's process, is illuminated. Each anecdote is followed by a philosophical reflection - from glimpse to resonance - which deepens the exploration of the complex dimensions of quality of life. The article examines key themes such as; Running, existential positioning, and holding on to quality of life; The stoic trust that sustains a patient's quality of life; and The restoration of clarity and direction for quality of life - one that is not measured, but felt, held, and sustained in relation. By exploring these dimensions, the article proposes a shift from traditional, measurable outcomes to a broader understanding of quality of life that transcends physical symptoms.

PMID:41452548 | DOI:10.1007/s11019-025-10320-4


Source: https://pubmed.ncbi.nlm.nih.gov/4145254 ... 22+67771e2