‘I didn’t want to be Psycho no. 1’: Identity struggles in narratives of patients presenting medically unexplained symptoms

Abstract

The aim of this article was to explore identity struggles related to the experience of living with medically unexplained symptoms (MUS) in illness narratives of patients with MUS. These patients pose therapeutic and communication challenges as their symptoms do not have an obvious underlying diagnosis. Previous studies have shown that their stories can best be described as ‘chaos narratives’, lacking a chronological development of symptoms or ‘legitimacy narratives’, through which patients seek to legitimize their invisible symptoms. The study draws on 21 interviews with MUS patients. The examples were selected from two contrasting cases in order to show how the patients accomplish their identity struggles through distinctive discursive tools, such as metaphors, modality, personal pronouns, evaluative devices, as well as characteristic interactional structure, navigating around the three identity dilemmas: continuity and change, self and other, and agent or undergoer.

“It’s not all nice and fun”: Narrating contested illness on YouTube and Instagram

“…In the case of contested illness, moreover, being unable is readily mistaken for being unwilling to ascertain good health. In recent qualitative studies about contested illness and somatically unexplained symptoms, this sentiment is epitomized by the prevalence of accusations of laziness ( Paxman, 2019 ), slackness ( Østebye et al, 2018 ), and mental instability ( Sowińska, 2018 ) by health-care providers and others. To counter such accusations, “questions and judgments regarding illness origin and the validity of complaints are often in the narrative forefront” ( Swoboda, 2006 : 235).…”

“They say it’s because I’m migrainous. . .” Contested identities of students with invisible disabilities in medical consultations

“…In particular, although the students often adopt a rather active approach to their illness management, demonstrating their active engagement in self-diagnosis and decision-making processes, or their struggle to overcome barriers, they often construct passive identities in relation to their conditions, with symptoms constructed as if coming from the outside, and affecting their lives directly (cf. Groenevelt, 2021;Paxman, 2021;Sowińska, 2018Sowińska, , 2019.…”

“…All this seems to be used not only to legitimize her invisible condition, but also to communicate her pain and suffering to the GP, and thereby construct a legitimate patient identity, which is common in patients with contested illnesses and unexplained symptoms (e.g. Hydén and Bülow, 2006; Japp and Japp, 2005; Sowińska, 2018).…”

“…This may not only help to establish legitimacy, but also to understand transformation of self because of illness (cf. Hydén and Bülow, 2006: 698; Charmaz, 1983; Cheshire and Ziebland, 2005; Sowińska, 2018). It is argued that an analysis of the discursive processes through which students with invisible disabilities construct and negotiate their identities during medical consultations will contribute to a better understanding of the complexities of living and studying with an invisible condition.…”

Making sense of symptoms, clinicians and systems: a qualitative evaluation of a facilitated support group for patients with medically unexplained symptoms

“…Patients with MUS describe feeling stigmatized [ 44 ] and having their illness dismissed by PCPs, family, and friends [ 44 – 47 ]. Many patients with MUS struggle with their identity (i.e., feeling like a different person as a result of the illness) while making sense of their illness [ 8 , 48 ] and hiding their symptoms to avoid being embarrassed when a condition cannot be validated with an established medical diagnosis [ 9 ].…”