Living with Dysautonomia: A Narrative-Clinical Case Study of Autonomic Dysfunction and Lived Experience
Abstract
Background: Dysautonomia represents a heterogeneous group of disorders affecting the autonomic nervous system (ANS), resulting in widespread, multisystem dysfunction. Despite increasing clinical recognition, patients frequently encounter diagnostic delays, fragmented care, and limited acknowledgment of their lived experience.
Aim: This paper explores the lived experience of dysautonomia through an integrated narrative-clinical lens, using poetic reflection as qualitative data to illuminate symptom burden, disease progression, and adaptive coping.
Design: A qualitative case study methodology was employed, incorporating a longitudinal series of 30 rhyming couplets authored by the patient. These poetic reflections were thematically analysed and aligned with established clinical literature across neurological, autonomic, neuromuscular, and psychological domains. This narrative medicine approach bridges subjective experience with biomedical understanding.
Results: The poetic corpus revealed pervasive symptomatology, including cognitive dysfunction, chronic fatigue, orthostatic intolerance, gastrointestinal and urological dysregulation, sensory hypersensitivity, and emotional instability. These findings align closely with clinical features of postural orthostatic tachycardia syndrome (POTS), pure autonomic failure (PAF), and related dysautonomic conditions. Psychological comorbidities - including anxiety, depression, and insomnia - emerged as significant amplifiers of disease burden. Despite these challenges, the patient demonstrated resilience through creative expression, spiritual grounding, and adaptive coping strategies.
Conclusion: This case study highlights the complexity and multidimensional burden of dysautonomia. Narrative and poetic expression provide a valuable adjunct to clinical discourse, enhancing empathy, diagnostic awareness, and person-centred care. Integrating patient voice into clinical frameworks is essential for advancing both understanding and treatment of chronic autonomic disorders.