[Pubmed] Are you weary of illness? Coping and existential positioning in life with myasthenia gravis

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Med Health Care Philos. 2026 Feb 23. doi: 10.1007/s11019-026-10332-8. Online ahead of print.

ABSTRACT

This article explores what it means to position oneself existentially in relation to illness weariness in myasthenia gravis. Grounded in phenomenology and informed by autoethnographic principles, the study examines how the body's changing disposition shapes lived meaning and coping in chronic illness. Phenomenological vignettes serve as experiential entry points, followed by reflective interpretation inspired by Havi Carel, Maurice Merleau-Ponty, Drew Leder, and Kay Toombs. Two experiential themes emerge. First, When the body doesn't always follow one's lead anymore shows how myasthenia gravis disrupts habitual rhythm and bodily trust. Bodily hesitation and the oscillation between resistance and responsiveness give rise to illness weariness-an existential modality distinct from physical fatigue or mood. Within this terrain, uncompromisingness appears as a quiet, existential stance; a refusal to let illness fully determine the direction of one's life, expressed through a persistent insistence on participation and dignity. Second, Physical activity and relational support as existential coping practices demonstrates how movement and relationship sustain existential positioning. Physical activity becomes an existential practice through which hope, orientation, and embodied rhythm are maintained, not by erasing illness weariness but by placing it alongside an uncompromising insistence on participation. At the same time, relational support, here exemplified by an attuned neurologist, serves as a subtle relational nudge that grounds and strengthens the will to continue. The study conceptualizes illness weariness and uncompromisingness as a continuum of existential responses shaped by bodily fluctuation and relational context. These insights extend beyond myasthenia gravis and point to the importance of existential attentiveness and relational continuity in clinical care.

PMID:41729403 | DOI:10.1007/s11019-026-10332-8


Source: https://pubmed.ncbi.nlm.nih.gov/4172940 ... 22+67771e2