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This paper presents a subset of findings from a qualitative study investigating the lived experience and perspectives of adults with POTS. Twenty-nine individuals participated in a series of focus groups. We present a conceptual model which summarizes themes related to illness-related experiences, emotional reactions, and coping strategies, and distinguishes how these vary from pre- to post-diagnosis. Our findings emphasize the myriad challenges of living with a condition with diffuse and wide-ranging symptoms, significant quality of life impacts, and limited treatment options, as well as the role of active coping strategies in facing these challenges and their emotional impacts. 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