Forced Agency: The Price of Being an Engaged Patient Managing Chronic Illness

: Contemporary healthcare discourse celebrates patient empowerment and democratized medical knowledge, yet lived experiences of chronic illness are more complex. Drawing on 35 interviews (with 32 Parkinson's disease patients and three caregivers) and ethnographic observations, both conducted in Israel, we illuminate how patients experience agency: often, more as burden than liberation. We introduce the term “forced agency” to capture how systemic inadequacies compel patients to become reluctant experts in their own care. Our data reveal a spectrum of engagement strategies, from rudimentary information-seeking to patient activism and knowledge-building, developed through varied, non-linear trajectories. Drawing on treatment burden theory, we expand the analysis to include epistemic dimensions, encompassing the draining intellectual and emotional labor of involuntary expertise. This involves the relentless pursuit of reliable information, navigating contradictory medical opinions, and negotiating with physicians from positions of accumulated yet “unofficial” knowledge. We trace how patients traverse multiple adaptations: confronting institutional information voids, summoning willpower against physical decline, and crafting complex emotional strategies to sustain this burden. While digital technologies promise democratized knowledge, they also intensify demands on already-vulnerable individuals. These insights challenge celebratory narratives of patient empowerment, and generate recommendations for healthcare systems for supporting patients’ autonomy without abandoning them.