Experiences of living with postural tachycardia syndrome

Abstract

Objective Postural tachycardia syndrome (PoTS) is a disorder of the autonomic nervous system which involves a range of symptoms, worsened when adopting an orthostatic (upright) position. Symptoms can include tachycardia, dizziness, fainting, nausea as well as many others which, as is typical of a syndrome, vary from person to person. Although research is increasing into this condition, the unifying experiences of managing it on a daily basis have not been extensively investigated. This study aimed to capture participants’ experiences of living with PoTS. Method A longitudinal digital ethnographic approach was employed. Eight participants recorded daily video diaries discussing their experiences of PoTS and its impact for 17 days. Interpretative phenomenological analysis was utilised to analyse the data and identify connections across participants’ accounts. Results Four superordinate themes emerged: ‘loss of control and lack of agency over body’, ‘identity changes’, ‘lack of understanding from others’ and ‘adapting to cope with PoTS’. Discussion The findings demonstrated the complex and widespread impact these participants experience from their PoTS symptoms, including the consequent emotional difficulties that result from managing this condition. An overall lack of understanding about PoTS by others was emphasised, suggesting the requirement for better education and support services for this condition.

Exploring the complexities of illness identity and symptom management in seeking a diagnostic label of postural orthostatic tachycardia syndrome (POTS): An inductive approach

“…Furthermore, despite purposive sampling, the sample in the current study comprised of mostly white females. Past literature has identified that this demographic may be representative of the wider POTS population (Waterman et al., 2021). However, it is unclear whether this is simply a result of the demographics of patients who are able to access care and therefore research.…”

Invalidated and ‘salty’: an auto/biographical and theoretical review of the lived experiences of individuals with PoTS

“…The first time that I used my mobility aid, I felt amazing as it helped me to go into the optician's without needing to hold onto anyone else and enabled me to feel secure and confident in the midst of dizziness and weakness. A theme identified in Waterman et al 's (2021) study was 'loss of control and lack of agency over body' and when referring to those with rheumatoid arthritis, Nettleton (2013: 65) (Nettleton, 2013). This resonated with me as it knocked my confidence having to depend on others when lacking agency over my body and I did not want to see my friends until I knew that if a dizzy spell occurred, I would be able to walk without linking arms or holding hands with them.…”

“…Initially, my research aims were to understand the impacts of social interaction, condition invisibility and misdiagnosis/ delayed diagnosis on individuals with PoTS. While a small number of texts qualitatively explored the lived experiences of those with PoTS (such as Waterman et al, 2021;Frye et al, 2022;Knoop and Dunwoody, 2022), and Frane's (2023) recent thesis explored the lived experiences of those with PoTS and Ehlers-Danlos Syndrome (EDS), I soon realised that there was/is a paucity of research in my chosen area. In these key texts, the authors analysed themes such as reduced functionality, invisibility, (in)validation, advocacy, condition management, adapting to cope, loss of control and agency, identity changes, mixed feelings, being expensive in many ways, gendered issues and the journey to diagnosis (Waterman et al, 2021;Frye et al, 2022;Knoop and Dunwoody, 2022;Frane, 2023).…”

“…While a small number of texts qualitatively explored the lived experiences of those with PoTS (such as Waterman et al, 2021;Frye et al, 2022;Knoop and Dunwoody, 2022), and Frane's (2023) recent thesis explored the lived experiences of those with PoTS and Ehlers-Danlos Syndrome (EDS), I soon realised that there was/is a paucity of research in my chosen area. In these key texts, the authors analysed themes such as reduced functionality, invisibility, (in)validation, advocacy, condition management, adapting to cope, loss of control and agency, identity changes, mixed feelings, being expensive in many ways, gendered issues and the journey to diagnosis (Waterman et al, 2021;Frye et al, 2022;Knoop and Dunwoody, 2022;Frane, 2023). My paper's final themes emerged through a combination of manually reviewing the interaction-related experiences of myself, other PoTSies in previous research and non-academic sources of patient stories such as some of those on the PoTS UK (a) website.…”

STUDY PROTOCOL Co-producing a supportive self-management intervention for Postural Tachycardia Syndrome (POTS) and testing for feasibility: an exploratory sequential three phase study

“…There is limited research in POTS, with a focus on biomedicine (13). There are two small qualitative studies in POTS with none including the experiences of health care professionals (14,15), no published self-management support studies and limited quantitative studies (13). A 2018 systematic review (16) and a 2021 mapping of the POTS evidence base (13) corroborates a limited evidence base of effective treatments.…”