Narrative hierarchies and chronic pain

It is a widespread contention in narratology that a narrative is informed by a sense of the ending to which it moves.20 Peter Brooks notes that the telos ‘shapes a story and gives it a certain direction or intent of meaning’,21 and Lennard Davis coined the term ‘teleogenic’ to denote the way certain kinds of narration are informed by a sense of their close.22 As Sara Ahmed says, “Reading for narrative is reading for the direction of its point”.23 In this article, I argue that conventions of narrative telos are a key way that illness narrations achieve normative work, demonstrating modes of being ill that have moral authority within particular cultural milieux. To avoid marginalising vulnerable voices, it may be that we need a complementary critical stance less attentive to the narrative arc of a text—and as such less attentive to an individual’s ‘personal illness journey’.24–27 To put it another way, this is not just about multiplying alternative illness stories, but also making a space for story that does not fit the expected form of ‘story’ at all.28 I will briefly examine how certain dominant expectations of illness narrative create and legitimise particular protagonist temporal orientations, and then I will describe how chronic pain can challenge these representations as well as the critical postures they have tended to engender.

In the ‘survivor’ genre of illness memoir, people facing illness are urged to self-position as ‘fighters’, which denotes having a ‘positive’ attitude and complying with practitioner instruction.29–31 ‘Fighter’ rhetoric also recruits medical patients to biopolitical self-surveillance and lifestyle management.32–34 Internalising survivorship discourse requires proleptically positioning oneself within a particular narrative expectation, invested in an eventual imagined triumph. This moral stance is reinforced by a narrative arc of ‘restitution’ (to use Arthur Frank’s term), characterised by patient faith in medicine’s ability to restore health.25 This narrative expectation limits what stories can be recognised within popular contexts, and refusing this narrative prolepsis is framed as moral failure.35–37

By contrast, medical humanities scholarship has long challenged such triumphalist narration, as well as emphasising the need for patients’ stories to counter the detachment of biomedical discourse.24–27 Yet many of these classic texts, too, celebrate particular narrative typologies and certain ideal temporal orientations for the protagonist. A recurring theme is the necessity of being able to represent the experience of a narratively coherent self. Frank, for example, describes how during illness, one may lose:

the central resource that any storyteller depends on: a sense of temporality…. The illness story is wrecked because its present is not what the past was supposed to lead up to, and the future is scarcely thinkable…. The way out of narrative wreckage is telling stories… the self is being formed [anew] on what is told.25

In such a view, a particular coherence in one’s story and a particular temporal orientation are seen as indispensable for life to be bearable. Illness is often described in terms of a narrative crisis, being locked in a present without a sense of a coherent narrative of past and imagined future. Ruth Nadelhaft, for example, describes illness as ‘tak[ing] place in what seems an eternal present. Past health and future recovery vanish in the face of the endless formlessness and present tense of the experience of pain…. Literature offers form, structure, and the illusion of dimension to what was out of control and without limit’.38 Anne Hunsaker Hawkins suggests that illness narratives try to ‘restore to reality its lost coherence and… discover, or create, a meaning that can bind it together again’.39 Similarly, Rita Charon suggests that medical practitioners inhabit ‘vectored time’, a time within which they can act and understand their actions as causally related, while patients inhabit ‘a timeless enduring’, where past/present/future are blurred, causality is mysterious, and agency is compromised.26 Charon argues that ‘the narrating of the patient’s story is a therapeutically central act, because to find the words to contain the disorder and its attendant worries gives shape to and control over the chaos of the illness’.40 In these models, writing helps one endure suffering by restoring a narrative form for one’s experience—and as a corollary, restoring a proleptic orientation for oneself as an agent who can take steps towards an imagined future. This is not to say that anyone naively assumes they are guaranteed a particular outcome, and indeed many illness narrations end ambiguously.41 Rather, I am describing how the cultural dominance of particular narrative forms come to imply virtue within certain kinds of protagonist temporal orientation, specifically an expectation of beneficial transformation in time.

Within Frank’s formulations, for example, a ‘quest’ narrative protagonist ‘honour[s]’ illness ‘for the sense of purpose that can be discovered in it … opening oneself to be changed by its experience’; and within ‘broken narrative’, one achieves a modicum of coherence collaboratively, with others helping to formulate one’s story.42 Even when illness cannot be cured, the protagonist can have ‘intransitive hope’, remaining open to an unspecified but beneficial transformation to come.25 These responses are beautiful and powerful, and I in no way write to demean them. However, I do want to consider how when certain kinds of temporal orientation within a self-story are deemed indispensable to a bearable human life, we risk marginalising those who cannot or will not take that stance.

Chronic pain can pose multiple challenges to the narrative orientations celebrated in both ‘survivorship’ discourse and classic medical humanities scholarship. In its recalcitrance to cure, its often-mysterious aetiology and its complex blend of somatic, interpersonal and affective elements, representations of chronic pain can require a richer vocabulary of temporality. Chronic pain disrupts the assumptions of our ‘analgesic culture’ that expects pain to be diagnosable and remediable.43 As a result, people living with chronic pain occupy a liminal position, with the social peril that implies.25 26 44–46 David Morris describes the isolation often attendant on chronic pain, which ‘seems to build up walls of separation’, ‘surrounding [people] with silence’.47 Lara Birk writes in her autoethnography that severe pain ‘not only ruptured the coherence of my narrative, it precluded coherence as a narrative possibility'; in her case, she found ’the embodied narrative of the person in pain is unpredictable, unreliable, and seemingly unsuitable for communication’.48 People living with chronic pain describe how their experience is disbelieved when it does not accord with expected narrations.48–51 Norma Ware calls this process ‘delegitimation’, and the epistemic violence of such a process cannot be overstated.51–53 In many cases the physical suffering is described as less unbearable than the emotional suffering of being disbelieved: ‘no [experience] was as devastating… as the humiliation that resulted from having their subjective perceptions and sensations of illness either trivialized or dismissed as psychosomatic’.51 Many people living with chronic pain report that they are excluded, marginalised and disregarded, and a key part of this vulnerability stems from narrative transgression, the way they may not be able to adopt the proleptic subjectivity attendant on a particular teleogenic narrative. They may flout the narrative conventions to which illness experience should conform.

Scholars of class, feminism and postcoloniality have identified many ways in which a narratively coherent self is a cultural construction imbricated with privilege. Matti Hyvärinen et al warn:

The normative mission to find and value coherence marginalizes many narrative phenomena, omits non-fitting narrators, encourages scholars to read narratives obsessively from the perspective of coherence, and poses ethically questionable pressures upon narrators who have experienced severe political or other trauma.… [T]he imperative of coherence works to legitimise certain narratives while excluding or marginalising others from the narrative canon.54

Similarly, Laura Salisbury, drawing on Angela Woods, warns that ‘linear narratives that stress deep psychological continuities across time and expressive, confessional “I”… might privilege and render problematically universal modes of subjectivity and self-expression that are, in fact, culturally and historically contingent’.6 9 10 Building on such critique, I want to suggest that it may be beneficial to widen our temporal vocabulary around representations of chronic pain, both intra-textually in describing protagonists’ temporal orientations and extra-textually in describing the processes of critical activity.

Reading without seeking coherence is not new—it has always existed as a counterstrand in medical humanities. Leading proponents of a narrative sense of self readily acknowledge that formulating a coherent narrative may at times be impossible or ideologically problematic. Cheryl Mattingly, for example, suggests that sometimes ‘silences or half-told tales disclose more’ than a ‘well-told tale’.55 Frank describes representations of grief in which ‘the nature of the experience does not, cannot, and never will coalesce into a cohesive whole, as narrative traditions expect wholeness’,56 and warns that dominant narrative forms can contribute to moral insularity, since ‘people have often learned their stories too well, so that other stories sound wrong at best and less than human at worst’.57

Faced with these perils, one remedy is diversifying stories. However, arguments have also been made for complementing analysis of narrative typologies with a renewed focus on fragments, mixed-genre modes and non-narrative elements of textual representation such as metaphor, diction, syntax and intertextuality.1 2 5–8 58–60 Anne Whitehead suggests that ‘fragmentary or mixed-media narrative modes’ may be valuable in conveying ‘chaotic and contingent’ illness experience.60 Keir Waddington and Martin Willis remind us that ‘narratives need not be linear… nor need they offer logic, coherence, or temporal movement’.8 An important alternative for reading for coherence comes from social science studies of oral narration. Mattingly suggests that the term ‘narrative drama’ can capture the way we ‘follow a narrative suspensefully, always reminded of the fragility of events, for things might have turned out differently’.61 Mattingly describes ‘emergent narratives’, moments where a social interaction acquires a spontaneous narrative quality, the embodied experience (not language alone) performing a sudden shared frame of reference. In these moments, life is suddenly raised to a narrative form.61 Mattingly’s model is invaluable in recognising how narrative form can be a delicate, spontaneous thing co-created in interaction; this is very different from teleogenic written memoir. Yet Mattingly is still describing narratives, stories moving in particular directions. Judy Segal suggests that when we approach illness primarily in terms of narrative, ‘we may find certain conventional structures too readily available, and then the whole process of figuring out if there is something to be learned from illness experience is shortcircuited by the salience of those structures’.24 If reading for narrative is ‘reading for the direction of its point’23 and for the degree of narrative coherence or narrative drama, then I suggest that reading episodically is to read looking for a place to pause—to cease looking for the arc of the individual longitudinal journey and instead to consider how a particular scene constructs an emergent present. To clarify this approach, I will now draw on affect theory.

Affect and temporality

Affect theory is concerned with the inseparable entanglement of the somatic, the social and (in some of its incarnations) the emotional.62–67 This scholarship seeks language to describe emergent, visceral, often inchoate forces: as Joel Burges and Amy Elias say, this scholarship ‘is the effort to understand the present as it plays out in somatic contexts’.68 Raymond Williams’s notion of ‘structures of feeling’ is helpful in considering the connections between visceral somatic experience, emotion, cognition and the social. In terms salient for the present discussion of chronic pain, Williams notes that structures of feeling are partially affective, in that they involve ‘a social experience which is still in process, often indeed not yet recognised as social but taken to be private, idiosyncratic, and even isolating’.69 Ahmed complements Williams’s ‘structures of feeling’ by noting that we should also think of affect in terms of ‘feelings of structure’, markers of the way social, economic and biopolitical ‘force and harm… [are] directed toward some bodies and not others’.23 In a similar vein, Ann Cvetkovich defines trauma not as an individual wound, but a social one: trauma is ‘a name for experiences of socially situated… violence’.63 Even experiences traditionally understood as wholly personal—such as physical pain—can be read as ‘feelings that open bodies to others’.64 As Marika Cifor says, ‘pain, like all emotion, is social’.70

Much affect theory examines the complex ways in which the present moment is shaped by suffering. Traditional trauma theory offers a powerful framework for understanding the ongoing impacts of catastrophic events,71–73 but several affect theorists find such models inadequate to capture the repeated and diffuse strain and injury mediated by structural inequity. Legacies of catastrophic events also reverberate in the present, each new tremor another intensity around which a particular mode of embodied suffering can accrete. Lauren Berlant speaks of ‘slow death’, the grinding down of vulnerable subjects that occurs not through dramatic events but through ‘structurally induced attrition… keyed to… membership in certain populations’.73 To express such processes, many affect theorists seek a language for the way any experience of the present moment is always incomplete, in process; in Berlant’s terms, the present is ‘a thing that is sensed and under constant revision’.73 Kathleen Stewart describes affect as symptom of the complex workings of biopolitical, economic and social pressures within the ‘weighted and reeling present’:

From the perspective of ordinary affects, things like narrative and identity become tentative though forceful compositions of disparate and moving elements: the watching and waiting for an event to unfold, the details of scenes, the strange or predictable progression in which one thing leads to another, the still life that gives pause, the resonance that lingers.74

Here, the present moment is read as a suspended and unpredictable site, suffused with lines of force social, political and personal. To put it another way, beyond identifying narrative ‘incoherence’, affect discourse gives a way to recognise the strained, equivocal labour of incoherence, of inhabiting a cryptic present moment. The emergent present is veined with lines of force somatic, emotional and social and may eventually find an as-yet-unknown meaning— but only retrospectively.73

Frank’s category of ‘chaos’  (anti)narrative is salient here, a narrative approximation of an anguished state in which the subject has lost any sense of agency and there is ‘absence of narrative order’, and no ‘discernable causality’.26 Such experience is by definition unrepresentable until after the fact. Frank’s discussions of these representations focus on their incoherence: ‘The lack of any coherent sequence is an initial reason why such stories are hard to hear; the teller is not understood as telling a ‘proper’ story. But more significantly, the teller of the chaos story is not heard to be living a ‘proper’ life, since in life as in story, one event is expected to lead to another’.26 While this category is invaluable, I suggest that a problem with it is the way that, like any typology, it may inadvertently limit critical response to ascribing the label. While a coherent ‘self’ may indeed be absent, there is still much to say about the way a text conveys the flux and flow of a tortured temporality. Affect theory’s attention to the emergent present may give a way to read incoherent ‘chaos’ outside from a narrative framework, not only as a dark, formless stage in a personal story.

A focus on the present moment as an emergent site infused with heterogenous lines of force can shift the way one might think of illness and wider biopolitics. Anthropologist S. Lochlann Jain, for example, meets cancer prognosis by refusing a survivorship narrative telos, embracing an alternative ‘elegaic politics’ which moves beyond personal illness story to consider the environmental, sociopolitical and iatrogenic activities which contribute to the increase of breast cancer in the West.75 Recent work seeks to combine a respect for the phenomenology of individual experience with a genealogical recognition of the subject as socially constructed.35 46 An episodic approach to illness representation and criticism meshes well with these dual goals, in that it may help resist subordinating discrete experiences or sociocultural context to a framing narrative of personal agency. Loosening traditional narrative telos can be part of a more ambiguous positioning of a ‘self’ as dependent on a range of other forces, both human and otherwise.76 77 In a similar vein, Willis, Waddington and Marsden, scholars of literature, culture and medical history, have called for an ‘aesthetic epidemiology’ that approaches texts in search not of plot but ‘episodes—independent aesthetic moments given life in language’, rich in intertextual and historical connections.7 In this article, I suggest that rather than approach moments in illness narration as either an individual failure to reach self-authorship, or as a temporary stage in an individual journey towards a coherent self and voice, we could approach these scenes as moments within social contexts, dramatising (for example) the structural exclusions afflicting those enduring this condition, the institutional contexts that find their experience unintelligible, and the economic pressures that render many people in chronic pain profoundly precarious.

Representations of chronic pain certainly can lament the experience of being trapped in a present torn from a coherent narrative of past and imagined future, as exemplified in the earlier quotations from Frank, Charon and Nadelhaft. However, I suggest that such texts may also locate their temporal horror differently, in ways that a narrative-focused criticism may conceal rather than help to understand. I am interested in the shifting lines of force (social, emotional and somatic) that shape the affective experience of these moments. To expand our vocabulary for this position, I offer a term for a particular affective experience of the present amid repeated marginalisation: the temporality of thwarted connection. This term seeks to convey the experience of a present in which one reaches for connection —for diagnosis, medical care, emotional support or companionship amid acute suffering—while aware of the (justified) anticipation of imminent failure and future pain, the recollection of past failures and past pain, acute self-awareness of one’s present performativity in the clinical encounter, and one’s ongoing somatic and emotional distress. Diagnosis is often necessary for doctors to offer further care, health insurance companies to fund it, and employers and loved ones to furnish support; as Alison Kafer describes, diagnosis may require ‘shuttling between specialists… repeated refusal of care and services, the constant denial of one’s experiences, the slow exacerbation of one’s symptoms, the years without recognition or diagnosis, the waiting’.44 78 As the ensuing literary case study dramatises, attempts to have one’s pain experience validated stand a high risk of failure due to the vulnerability of chronic pain patients as liminal figures who breach diagnostic and social boundaries. Rather than assess this text in terms of its narrative coherence or drama, I want to explore how it depicts particular tormented moments before they solidify into stable ‘meaning’, conveying the complex temporality of an agonised present.

Conclusion: staying with the trouble

Describing the need for new ethical modes of being on human-damaged earth, Donna Haraway calls for ‘staying with the trouble’, to develop a capacity to remain with the distress and tumult, choosing to focus on the present.82 Haraway formulates this concept within her cultural studies work on ecological devastation, but I find her phrase invaluable in this different context. I suggest the phrase can also capture the challenge and promise of an episodic, moment-focused reading. In such a reading, one does not seek to move too quickly to discerning a narrative framework, wary of the way such framing can leach the painful affective complexity from a representation of an emerging present.

It is difficult to hear suffering without imposing a narrative framework.83–85 Indeed, narrative medicine has shown that narrative typologies can be invaluable in the way they help hearers/readers to better notice aspects of patient experience. While I greatly respect this approach, I suggest that it can fruitfully be complemented by an episodic focus, letting disturbing moments stand alone before taming them within a narrative of progress, personal meaning or other telos and consolation. As a parallel to ‘flash writing’, here I am urging what might be called ‘flash reading’, a willingness to surrender— even if briefly—to the instant of the textual encounter, to the passage, the excerpt, the troubling episode, and to let that extract sit with you, remain with you, haunt you, without closing it off within a narrative arc. I do not suggest this is a novel approach—this kind of episodic reading has always been part of a reader’s repertoire of response. Rather, I am seeking to name it and to bring it more consciously into the strategies of our analytic discourses, specifically in the hope of disrupting certain axioms of illness narrative study, resisting inadvertent hierarchalisation of illness experience, and crucially, feeling towards an articulation of the way illness experience and narrations can be seen as an emergent present infused with lines of force.

Ann Jurecic, a scholar of literature and life writing, warns that literary criticism of pain has often failed to consider the question of ethical response. Following Scarry’s formulation of pain as annihilating the world, critics have tended to read representations of pain for the way they convey the experience as incommunicable, failing to recognise that what these narrations often seek is not someone to understand the specific nature of the pain, but rather to acknowledge the reality of the suffering.86 Sharing Jurecic’s concern, I suggest reading episodically can also lead to a different sense of the affective response of a reader/auditor: not to respond to suffering with ‘you are so brave’, or even with ‘your pain is a mystery’, but with ‘I believe you suffer and I stand beside you’. This kind of reading/hearing stance may also have value in the context of encounters between healthcare practitioners and patients. Catherine Belling has suggested that lyric may be more helpful than narrative for describing the process of reflective practitioners, capturing the need to ‘pause the momentum of plot and to focus down, observe closely and question deeply’.1 In a similar vein, I would suggest that alongside narrative competence, practitioners need to be aware of how listening  for narrative also has risks. Rather than foregrounding the coherence of some illness representations, we can recognise how value may inhere in the rupture and the breach. We can heed these traces of embodied suffering before they solidify into story.