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

TY - JOUR

T1 - “You’re always fighting”: the lived experience of people with postural orthostatic tachycardia syndrome (POTS)

AU - Knoop, Iris

AU - Dunwoody, Lynn

PY - 2022/5/7

Y1 - 2022/5/7

N2 - Purpose 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. Materials and methods 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). Results 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”. Conclusions 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.

AB - Purpose 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. Materials and methods 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). Results 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”. Conclusions 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.

KW - POTS

KW - postural orthostatic tachycardia syndrome

KW - IPA

KW - self-management

KW - Misdiagnosis

U2 - 10.1080/09638288.2022.2071482

DO - 10.1080/09638288.2022.2071482

M3 - Article

SN - 0963-8288

VL - 45

SP - 1629

EP - 1635

JO - Disability and Rehabilitation

JF - Disability and Rehabilitation

IS - 10

ER -