Vijayasingham Lavanya
Jeffrey Cheah School of Medicine, Monash University Malaysia, Selangor, Malaysia.
Chronic Illn. 2018 Mar;14(1):42-53. doi: 10.1177/1742395317699450. Epub 2017 Apr 25.
Objectives Chronic illness is known to disrupt and redirect the usual course of work trajectories. This article aims to portray the longitudinal course of negotiating work after multiple sclerosis. Methods Using therapy and personal journals to reconstruct memories and experience, an autoethnography is produced and narrated within Campbell's "Hero's Journey" automythology framework. Results The narrative highlights the intrasubjectivity of illness meaning-the changing internal meaning-making and external behavior and decision-making dynamics. The journey of being inhibited to "Work Right", to "Looking for the Right" and ultimately, finding "Right Work" is charted; portrayed as a bittersweet maneuver to achieve work-illness equilibrium. Discussion This journey traverses a spectrum of negative coping-the exhibition of deviant work behaviors, disengagement and depression; to recalibration and renewal; culminating in living the "new normal", and finding moral and meaningful work engagements. Life trajectories with chronic illness are often skewed and redirected; but longitudinal narratives of normalization and coping also highlight the pursuits to secure and maintain a life of meaning and value.
目标 众所周知，慢性病会扰乱并改变正常的工作轨迹。本文旨在描绘多发性硬化症患者在工作协商方面的纵向历程。方法 通过治疗记录和个人日记来重构记忆与经历，在坎贝尔的“英雄之旅”神话框架内创作并叙述了一篇自我民族志。结果 该叙述突出了疾病意义的主体间性——不断变化的内在意义构建以及外在行为和决策动态。描绘了从被限制“正确工作”，到“寻找正确之事”，最终找到“正确的工作”的历程；这被描述为实现工作与疾病平衡的苦乐参半的策略。讨论 这段历程涵盖了一系列负面应对方式——表现出异常的工作行为、脱离工作和抑郁；到重新校准与更新；最终达到“新常态”，并找到有道德且有意义的工作投入。患有慢性病的人生轨迹往往会扭曲和转向；但关于正常化和应对的纵向叙述也凸显了对获得并维持有意义和有价值生活的追求。
