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Postural orthostatic tachycardia syndrome (POTS) is a debilitating and poorly understood disorder of the autonomic nervous system with many different causes, mostly seen in females of child-bearing age. This study used an illness representation framework to explore the lived experience of those living with a medical diagnosis of POTS. Six individuals (aged 20–42) were recruited from two POTS online support groups. Individual semi-structured interviews were used to explore the five illness representations of identity, cause, consequences, timelines, and cure/controllability. Data were analysed using interpretative phenomenological analysis (IPA). Lived experiences were characterised by four overarching themes: “Fighting to be heard”, “My individual self-management toolbox”, “A mixed bag of emotions”, and “I’m expensive in so many ways”. Individuals faced considerable physical, psychosocial and financial challenges and felt underserved by healthcare and support provision. Early diagnosis and recognition of symptoms, along with education on self-management may help reduce associated mental health burdens. A biopsychosocial conceptualisation of this condition may help lead to a more integrated approach to care.Implications for rehabilitationLiving with POTS impacts on all aspects of life, including work, family, and social relationships/activities, and has financial burdens.Family doctors need education on the existence of POTS and the importance of providing biopsychosocial support services.More timely diagnosis of POTS is required, with access to specialists who understand the burden of living with POTS. Living with POTS impacts on all aspects of life, including work, family, and social relationships/activities, and has financial burdens. Family doctors need education on the existence of POTS and the importance of providing biopsychosocial support services. More timely diagnosis of POTS is required, with access to specialists who understand the burden of living with POTS.

“You’re always fighting”: the lived experience of people with postural orthostatic tachycardia syndrome (POTS)