Methods

Stories of living with postural tachycardia syndrome

The accounts included in this paper are extant narratives written by people living with PoTS collected from the websites of three patient organisations. PoTS UK is a UK-based registered charity that developed in 2010 out of a Facebook support group for people with PoTS. It provides information, support and education and is managed by a board of trustees, many with medical backgrounds. Syncope Trust and Reflex Anoxia Seizures (STARS), ‘The Blackouts Trust’, is a UK-based information and support group for people experiencing syncope (fainting) that was founded in 1993 by the mother of a child with reflex anoxic seizures (RAS), a form of syncope. The Dysautonomia Information Network (DINET) is a US-based, volunteer-run, non-profit organisation that provides information, support and health professional resources on a number of dysau-tonomias, including PoTS.

Our sample consisted of 64 stories of living with PoTS that contained talk about medications drawn from a total of 99 stories posted publicly to the websitesof these three organisations. Stories were accessed in January of 2017, with the approval of the organisations. Of storytellers, 92% were female, 59% were living in the United Kingdom and 41% were in the United States. Only slightly more than half (n = 34) discussed their age at the onset of symptoms or age at diagnosis. Of these, the average age at onset of symptoms was 18 years (range, 4-41 years), and the average age at diagnosis was 24 years (range, 16-43 years). Among those who discussed both their age at onset and at diagnosis, the average time to diagnosis was 7 years. Among those who did not provide a numerical age, the majority described symptom onset as occurring during secondary school or university.

Analysing medication narratives

Frank notes, ‘Storytelling is for an other just as much as it is for oneself’ (Frank, 2013, p. 17). In his view, telling stories about living with illness involves both an ethic of solidarity, of speaking with others who are living through their own experiences of being ill, as well as an ethic of inspiration, of serving as exemplars to inspire others to ‘live well’ through illness. This is why Frank considers storytelling an ethical practice, imbued with the responsibility not only to self but also to others (Frank, 2013). We chose to study extant narratives of using medications because we wanted to explore stories created by individuals as communicative body-selves (Frank, 2013) in dialogic interaction with others outside of the environment of the research interview. Our interest in these stories about medicines is specifically in the work they do of sharing with others in spaces, particularly virtual spaces, where storytellers and audiences engage with each other as communities of practice (Lave &. Wenger, 1991).

Our analysis is informed by Riessman’s (2008) thematic approach to narrative analysis and strategies for narrative coding and analysis described by Fraser (2004). While coding the stories thematically, we sought to treat them as full accounts even as we excerpted discrete sections of text. The stories were first collated from across the three sources into a single data file. They were then read in their entirety by the first author. Those that included stories about medicines embedded within narratives of living with PoTS were collated into a separate data file. This set of ‘stories about medicines’ was then reread as a whole by the first author to increase familiarity with their content. The stories were then coded thematically using deductive, inductive and in vivo codes, utilising NVivo 11 qualitative analysis software. Coded stories were reread and analytic memos were written for each story reflecting on codes of interest and including textual excerpts most relevant to these codes. The coded stories were reviewed and revised by the research team. These analytic memos became the basis for the analysis that follows.

We conceived of medicines as symbolic and material objects that are productive of and produced by the stories told to make sense of the experience of managing chronic illness. Our analysis focused on the dramatic within these stories told about medicines, seeking to answer the question: what narrative work is accomplished by telling stories about what medicines do and what do these stories tell us about the dramas of living with illness.

Findings

Each of the stories in our analysis was one of making sense of taking medicines and living with PoTS. Some were stories of having lived for many years with inexplicable heart palpitations, dizziness, fainting and other symptoms. Others were stories about making sense of the biographical disruption (Bury, 1982) created by a recent onset. They were stories of quests for legitimacy, to have an illness diagnosed and acknowledged as ‘real’, and of butting up against a health care system that could not initially explain these strange and frightening symptoms or that sought to explain them in ways that did not make sense within individuals’ frameworks of being ill. As ‘quest narratives’ (Frank, 2013), many of these stories drew to a close with reflections on the journey from medically unexplained symptoms, through diagnosis and treatment, to making the best of a life lived with a disruptive, at times highly debilitating chronic illness. Embedded within them are narratives about making sense of medicines as one among a number of ‘things’ that are engaged with in the work of ‘living well’ with PoTS. Medicines, as symbolic and material objects, were drawn into narratives like ‘props’ on a stage that enabled storytellers to tell of action done on their bodies, their selves and the problem posed by illness itself. We identified three kinds of dramas in the narratives studied: (1) dramas of embodiment, (2) dramas of signification and the self, and (3) dramas of experimentation, which illuminate something novel about the narrative work of medicines in illness narratives.

 
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