Paradigm Shift: The Lived Experience of a Researcher with Postural Orthostatic Tachycardia Syndrome

Postural orthostatic tachycardia syndrome (POTS) is a poorly recognised but frequently experienced autonomic nervous system dysfunction. Females of child-bearing age are disproportionately affected, and the syndrome is associated with high disability. POTS has an elusive aitiology but is increasingly recognised as having an immune association and is often triggered by varying environmental factors including viral infection and trauma. This chapter will focus on the narrative story of the diagnostic and research odyssey of the author. Using Kolb’s experiential learning cycle, this narrative will reflect on concrete examples of experience to abstract conceptualisations of improved research practices that value and esteem the lived experience of peer researchers with chronic illness (Kolb D. Experiential learning: experience as the source of learning and development. Upper Saddle River: Prentice Hall; 1984). The chapter will detail lessons learned about the historical limitations of the medical model and, in particular, the reasons behind the failings of the traditional positivist approach to research. It will detail the challenges of entrenched gender stereotypes and societal attitudes towards chronic health while following the author’s transition from patient to health professional to researcher. Finally, the narrative will articulate the benefits and limitations of ‘lived experience’ and why it is integral to the progressive research methodology.