• Introduction

Because chronic illness/pain persists despite traditional medical approaches, it is easy to ascribe the condition to the patient’s very identity. However, this is a harmful oversimplification of a rather complicated reality; people suffering from chronic illness/pain often experience an incompatible dualism of identities in which a foreign ill-self emerges in competition with the familiar well-self. Unfortunately, cultural stigmatization of chronic illness/pain turns a blind eye to this phenomenon, thereby perpetuating the patient’s unstable sense of self. 

This is problematic on both the psychological and physical levels. Psychologically, it is well-established that “individuals are interested in preserving firmly held self-conceptions that meet fundamental individual needs,” and “activities that disconfirm a person’s self-concept create distress” (Schafer et al. 167). Therefore, the stigmatization of chronic illness/pain threatens the patient’s emotional well-being. 

Moreover, it is thought that the cultural invalidation of chronic illness/pain physically “stimulates the very biological processes that are responsible for producing their pain” (Barker and Moseley 10). This is because chronic conditions often arise out of the body’s overreaction to a conflation between the self and non-self; societal rejection of chronic illness/pain heightens anxiety and disruption of self-concept, thereby triggering the body’s (maladaptive) protective responses. Clearly, remedying the disruption and invalidation of identity due to chronic illness/pain would be beneficial to both the patient and society as a whole (which bears the medical and economic brunt of chronic illness/pain). 

While it might be unrealistic to suddenly eliminate cultural stigmatization, it may be fruitful to seek healing on the individual level. In this paper, I identify literary trauma theory as a guide for individually healing chronic illness/pain-induced identity fracture. In “Trends in Literary Trauma Theory,” Michelle Balaev argues that trauma, or identity fracture, may be healed by retelling its story in the face of the forces which silence it. Applying this to chronic illness/pain as a form of trauma, I posit that the patient’s disrupted identity may be healed by sharing the chronic illness/pain narrative, as defined by Kathlyn Conway in Beyond Words: Illness and the Limits of Expression. By subverting cultural stigmatization and the formal conventions of the triumph narrative, the chronic illness/pain narrative allows the patient to derive meaning from their experience and heal their broken identity.

  • Chronic Illness and Fractured Identity

People diagnosed with chronic illness often experience a fracturing of identity. As Conway expresses, to learn that (part of) one’s body has betrayed itself is to discover a foreigner within: “the body or the affected body part is experienced as alien” (Conway 42). The extent to which the illness consumes the identity, she continues, is proportional to the severity of the illness: in moderate illness “the self is often experienced as divided” and sometimes “the person may disown the offending body part”; in extreme conditions, “the pained self becomes the only self,” and near death there is a “total loss of self” (Conway 42). This disruption of identity is particularly salient for sufferers of chronic illness because, contrary to acute conditions like the flu or a broken arm, chronic illness is a long-term, or even life-long, sentence. A person with a temporary ailment can usually be assured that their former state is just on the other side of a definite stretch of time. On the other hand, a person with a chronic illness recognizes that their former state of being is indefinitely lost; furthermore, a new lifestyle must emerge in adaptation to the illness. Thus, a patient with chronic illness lives a fractured existence, the self a conglomerate of familiarity and betrayal.

In addition to the identity conflict which arises when a person is diagnosed with chronic illness/pain, social othering of the patient feeds into their sense of otherness within. Foremost, medicine’s “focus on disease, as if the body is separate from the person, often contributes to the patient’s sense of the body as alien and not quite human” (Conway 49). As I will develop further in a later section, the cultural notion that disease is foreign and unnatural confirms the patient’s partial self-alienation when diagnosed with a chronic illness/pain. Furthermore, because “medicine is probably the most authoritative institution in the United States,” medical stigmatization of chronic illness may be likened to “an in-group purposefully delegitimizing an out-group” (Jackson 342). Thus, the consequence of skepticism of chronic illness/pain within the medical field is that of a systemic othering.

Additionally, social rejection of chronic illness/pain often leads the patient to partially reject themselves, leaving them in a liminal space between self-acceptance and self-estrangement. In the case of one woman living with chronic pain, “she is horrified by her own pain, and refuses to accept it… because she is so horrified by others’ abjection of her pain” (Sheppard 12). When a person is estranged from society because of their illness identity, their illness is simultaneously legitimized (because it is the illness that marks them as other) and delegitimized (because they are pushed into oblivion). As the patient is treated as neither valid nor invalid, the dissolution of their identity is confirmed. As happened with the woman described above, this instability of self manifests in self-abjection; therefore, external otherness reinforces

internal otherness.

However discouraging this fate, not all is lost– a fractured self is not the same as a complete dissolution of self. As Emma Sheppard asserts in “Chronic Pain as Emotion,” chronic pain does not render “the self as wholly destroyed by pain” but is merely “de-stabilizing” (10). This distinction is essential, for a fracturing implies the possibility of healing. Although the end result, like a broken mirror glued back together, will probably not be the same as it was initially, it will be functional. In applying literary trauma theory to chronic illness, this paper will attempt to put forth a means of healing the broken self.

  • Literary Trauma Theory and Chronic Illness

Literary trauma theory says that one may reconcile a fractured identity by finding meaning in the contextualized source of the fracture. That source is trauma, widely defined as “a person’s emotional response to an overwhelming event that disrupts previous ideas of an individual’s sense of self” (Balaev 150). In contrast to the common belief that trauma irreversibly destroys the self, Balaev explores “an alternative perspective on the meaning of traumatic experience that emphasizes the reformulation of identity, not simply the destruction of the self” (159). Because this conceptualization assumes that the broken identity may be reconciled, it may offer a method by which to attain that healing.

This answer may lie in Balaev’s assertion that the “degree to which traumatic experience disrupts… self… is mediated by cultural values and narrative forms rooted in a place that allows or disallows certain emotions to be expressed” (156). If these cultural values and narrative forms dictate the initial fracturing of identity, then perhaps by subverting these values and forms, one may reclaim their identity.

One might apply this framework to the experience of chronic illness/pain. Surely chronic illness/pain fits into Balaev’s definition of trauma: as previously illustrated, chronic illness/pain challenges the individual’s self-concept, necessitating a re-evaluation of identity. Let us, then, apply Balaev’s theory to chronic illness/pain: by elucidating the cultural values and narrative forms which govern the silencing of the chronic illness experience, one might reveal a method by which to heal the patient’s fractured identity.

  • Cultural Values Affecting Expression of Chronic Illness

The cultural conceptualization of illness as a foreign, curable evil, and widespread endorsement of Cartesian dualism result in the stigmatization of chronic illness/pain, thereby silencing the sufferer from sharing their experience. Where Western culture is dominated by an “analgesic” medical paradigm where pain relief is the golden standard, persisting or incurable pain (as in chronic illness/pain) is viewed as a failure of medicine and/or of the patient (Sheppard 8). Ironically, rather than securing it as an essential challenge for the medical field, the untreatability of chronic pain precipitates its delegitimization as a public health concern, ultimately silencing the patient (Barker and Moseley 10). 

In addition to the “abnormal” immutability of chronic illness/pain, its liminality in the spaces of body versus mind and illness and wellness marks it as not only foreign but also immoral. Western culture takes for granted the body/mind independence defined by Cartesian dualism; medicine follows in this tradition by classifying illnesses as either physical or mental and treating them accordingly. However, chronic illness/pain “transgress[es] the categorical division between mind and body” and thereby defies “normal routines of biomedical treatment” (Jackson 332). So ingrained is the division of mind and body in Western medicine, that chronic illness/pain is perceived as “threatening” (Jackson 332). As a result, a patient with chronic illness/pain may feel culturally rejected; to prevent further ostracism, they may refrain from expressing their suffering.

Furthermore, because chronic illness/pain often fluctuates in intensity, it disobeys the cultural conceptualization of illness as a curable, unnatural phenomenon. As chronic illness/pain eschews the boundary between illness and wellness, patients are treated with a dose of skepticism, becoming the subject of a “hermeneutics of suspicion” (Barker and Moseley 14). In a society which views illness/pain as an evil but temporary visitor, it is not uncommon for a person with chronic illness/pain to be labeled as fake or manipulative. Even healthcare professionals may doubt the legitimacy of their patients’ pain and suspect them of “malingering or [having] ‘psychogenic pain’” in which it is often assumed that the patient is “both mentally and morally deficient” (Barker and Moseley 14). In this way, chronic illness/pain is invalidated, and the patient may fear further delegitimization lest they maintain their suffering to themself.

The literal invisibility of chronic illness/pain only contributes to this delegitimization, especially when fluctuations in pain are accompanied by “very little difference in a sufferer’s appearance” (Richardson 36). Where it is culturally assumed that illness/pain is the result of an identifiable source, the lack of clear cause in chronic illness/pain lends patients a certain air of ambiguity and moral questionability. As a result, patients with chronic illness/pain may be seen as a “classificatory and moral ‘monstrosity’” “breaking the “codes of morality surrounding sickness and health” (Jackson 345, 332). Thus, the persistence, liminality, and invisibility of chronic illness/pain are socially rejected as inconsistent with cultural values and assumptions. Patients are treated as foreign and immoral, and are therefore discouraged from sharing their experiences.

The cultural silencing of the chronic illness experience is harmful because it deepens the physical and psychological pain of the sufferer. As Elaine Scarry notes in The Body in Pain, pain “that is more visible will receive more attention” (12). When a person with chronic illness/pain is unable to share their experience, they are unable to receive the physical treatment and emotional support they need. Conway notes that stigmatization of chronic illness/pain “can result in harm to patients… real physical problems are overlooked, bad treatment results, and patients are left feeling isolated and even shunned” (8). Additionally, because “mental health rests upon a person’s ability to experience and tolerate the full range of emotions,” by silencing the psychological pain of chronic illness, the culturally-encouraged triumph narrative harms the patient’s well-being (Conway 6). Echoing this sentiment, Scarry posits that “the doubt of other persons… amplifies the suffering of those already in pain” (7). Certainly, the societal suppression of chronic illness/pain narratives only deepens patients’ suffering by refusing them physical care and enhancing psychological turmoil.

  • Narrative Forms Dictating Expression of Chronic Illness

In addition to cultural values, Balaev identifies the narrative forms available to a trauma survivor as influencing their ability to heal their broken identity. Therefore, it is relevant to explore the narrative forms available to patients with chronic illness/pain.

The primary obstacle to the narration of the chronic illness experience is that society espouses a narrative form that is incompatible with the chronic illness experience. Conway defines this convention as the “culturally validated narrative of triumph over adversity” in which a person is “better off at the end than at the beginning” (7, 4). By nature, this narrative form contradicts the reality of chronic illness/pain, which lacks a clear resolution and often does not leave the patient better off than they started. In this way, the triumph narrative “constitutes a denial of illness,” and chronic illness in particular (Conway 4). Sugar-coating the suffering of patients with chronic illness/pain, the triumph narrative nullifies the fracturing of their identities, “minimiz[ing] the damage done to the self” (Conway 44). Where the triumph narrative sets an expectation for a happy ending, it silences the stories that don’t end so well. Society’s demand for an optimistic resolution means that there are very few examples of chronic illness narratives, and the endeavor to write one becomes a war against social expectations.

In addition to content, the form of the triumph narrative hampers the expression of the chronic illness experience. Traditional storytelling “assumes a stable self to be represented in writing through such techniques as chronology, a consistent narrative voice, and plot” (Conway 58). Chronic illness, however, defies these conventions. As already discussed, chronic illness often disrupts the patient’s sense of self; furthermore, the perceived self may change over time as the symptoms of the illness wax and wane (Conway 14). Therefore, a consistent narrative voice is an impossibility when expressing the chronic illness experience. Additionally, the temporal persistence of chronic illness means that it lacks a clear beginning and end, eluding the traditional plot structure. Clearly, the storytelling precedent set by the traditional triumph narrative fails to serve the chronic illness writer, thereby silencing their story.

  • Subverting Silencing Forces to Heal Fractured Identity

Balaev asserts that if one takes into account the cultural values and narrative forms that limit the retelling of the trauma narrative, they may heal their fractured identity. Therefore, I hypothesize that by identifying and consciously subverting the cultural values and narrative forms which silence the chronic illness narrative, a patient may heal their broken selfhood. This can be accomplished by sharing the chronic illness experience through non-traditional narrative forms, thereby defying cultural stigma and formal constraints. In telling their story against the forces that silence it, the chronic illness patient may regain a stable self-concept.

To describe how the narrative form may be adjusted to properly portray pain, it can be useful to reference existing scholarship on how this is achieved at the syntactic level, and then apply these principles to the greater narrative structure. In The Body in Pain, Elaine Scarry notes that pain, in general, is “at once that which cannot be denied and that which cannot be confirmed” as it is persistent and immutable for the sufferer but intangible to the observer (4). This especially applies to chronic illness/pain, which lies outside of the medical paradigm of having an identifiable, treatable cause. Because of this simultaneous being and not-being, pain is often incommunicable (Scarry 4). Moreover, where language is “the way other persons become visible to us, or cease to become visible to us,” when pain goes unexpressed, it “is not observed, and thus is not real to others” (Scarry 22; Sheppard 12). Chronic pain’s particular resistance to language thus renders the sufferer invisible, a foreigner to society. It also strengthens cultural stigma because “the failure to express pain… will always work to allow its appropriation and conflation with debased forms of power” (Scarry 14). Internal invalidation therefore perpetuates social invalidation by both silencing the patient and feeding into the stigmatization of chronic illness.

Giles Deleuze’s “He Stuttered” offers creative stuttering as a solution for overcoming pain’s resistance to language. When normative language is “inadequate,” one can develop new tools by reimagining language conventions (Deleuse 113). In making one’s language stutter– coupling, dividing, recoupling meanings– one can “make language grow from the middle” and “confront silence” (Deleuze 111, 113).  Notably, Deleuze compares the creative stutterer to a “foreigner in the language in which he expresses himself,” indicating that they successfully access that which is repressed (109). Through creative stuttering, then, one may drag silenced stories to light. By defying storytelling conventions, perhaps a person with chronic illness might find a means of expressing their muted pain and confirming the self.

Indeed, anthropologist and physician Arthur Kleinman notes that “‘it is possible to talk with patients, even those who are most distressed, about the actual experience of illness, and that witnessing and helping to order that experience can be of therapeutic value’” (Conway 11). Sometimes, merely a different mode of storytelling is wanted. Deleuze’s creative stuttering may be applied at not only on the syntactic level but also at the structural level to adequately express the chronic illness experience. Thus, by overcoming pain’s resistance to language through creative stuttering, one may also subvert the narrative conventions normally silencing the chronic illness narrative.

Conway echoes Deleuze in outlining how some authors defy these storytelling norms to share the chronic illness experience. Where traditional literature “proves woefully inadequate for depicting the nature of physical pain and the dissolution of the self,” authors of the chronic illness narrative confront “the limits of language and literary form representing pain” (Conway 3). In “question[ing] the conventions of the triumph story,” they “experiment with language and form in an attempt to accurately represent the essence of their experience” (Conway 13). By employing creative stuttering on both the syntactic and structural levels, the triumph narrative may be subverted and the chronic illness narrative better represented.

An example of this creative stuttering to narrate unspoken pain is in Georgina Kleege’s “Sight Unseen,” in which the author attempts to represent her experience with blindness. While blindness is not technically a chronic illness/pain, it is subjected to some of the same cultural invisibility and resistance to medical treatment as chronic illness/pain; therefore, the blindness narrative must adopt many of the same creative stuttering techniques as the chronic illness/pain narrative does. In an analysis of Kleege’s piece, Susannah Mintz describes the process of representing the culturally invisible or silenced self as “performative utterance” (156). Like creative stuttering, performative utterance is “deliberately anti-linear… fragmentary” (Mintz 158). By unapologetically announcing her blindness, Mintz argues, Kleege engages in “an act of defiant self-recreation” (159). To put forth the unsilenced blindness narrative, Kleege relies upon creative stuttering to portray the non-chronological, self-shattering nature of her experience. This truthful investigation allows her to derive meaning from her pain and re-construct her selfhood.

Similarly, a patient with chronic illness/pain may reconstruct their shattered selfhood by sharing their story unhindered, in doing so breaking past the constraints of the linear narrative. Because the chronic illness experience is defined by principles of creative stuttering such as lack of chronicity, fluctuation, and repetition, simply telling one’s story as faithfully as possible is in fact an act of creative stuttering. Simply put, the chronic illness narrative “embrace[s] all aspects of the experience and… remain[s] true to [oneself] throughout” (Conway 3). Therefore, in defying the cultural and narrative stigmatization of chronic illness/pain, the chronic illness storyteller uncovers and challenges the factors which at once silence their story and maintain their divided identity. By challenging these factors, one may reclaim their selfhood; thus, the act of writing the chronic illness narrative is a radical act of defining and asserting one’s existence when both the nature of chronic illness and social estrangement render the self invisible.

  • Interdisciplinary Support for a Chronic Illness Literature

Multiple areas of academic research suggest that the chronic illness narrative may, indeed, prove valuable to enhancing patients’ well-being. Psychologically, it is thought that “the very process of constructing a coherent story may help the healing process” because it allows people to “make sense of what has happened to them and thus support their emotional recovery” (Ziebland and Wyke 236). Notably, this lines up with Balaev’s theory that the trauma novel endeavors to heal suffering by making meaning out of the disruptive events.

Additionally, storytelling catalyzes healing because it makes suppressed pain visible. In Sheppard’s interview of patients with chronic pain, she concludes that “the more you speak of pain, the more it can no longer be pushed aside… making their pain visible through their emotions, was an important part of how participants negotiated living with chronic pain because of this sharing” (18). The expression of pain may not even be for the purpose of obtaining treatment or relief; Conway notes that often, chronic illness writers “speak not out of a concern with techniques for managing illness but out of a deeply held desire to describe their suffering and pain” (15). By facilitating the exchange of chronic illness/pain stories of suffering, the chronic illness narrative may promote the emotional healing of the narrator and the audience alike.

One woman’s experience with pain neuroscience education (PNE) supports the argument that the mere act of voicing and legitimizing invisible pain can encourage its resolution. PNE teaches patients that their pain is not necessarily an accurate indicator of injury or disease; in some cases, it can act like a faultily sensitive alarm that alerts even when something harmless occurs (Whitcomb, 2021). What PNE does not teach, however, is that any pain is invalid. Rather, it says that all pain is real, and all pain may be mitigated under the right mindset. The article stresses that “what can make pain worse, however, is the cycle of being told that everything is just fine” (Whitcomb, 2021). Like the chronic illness/pain narrative, PNE aims to prevent stigma-induced pain exacerbation, instead legitimizing chronic pain as valid suffering. 

Similarly, in a psychological study of illness identities and health outcomes for patients with chronic illness, Oris et al. assert that a patient’s appraisal of their pain may be linked to psychological and physical functioning. The authors write that “acceptance of the illness as part of one’s identity might lead to more adaptive better coping and self-care… and hence, better (perceived physical health)” (Oris et al., 430-31). Clearly, the degree to which a patient with chronic illness feels legitimized influences their well-being by either supporting or discouraging adaptive actions. If the chronic illness narrative can confirm the validity of the patient’s suffering, then the patient might be better able to cope with their condition, physically and psychologically. 

  • Conclusion

Applying Michelle Balaev’s interpretation of literary trauma theory to chronic illness, the shattered self may be reclaimed by confronting the cultural values and narrative forms that normally silence the chronic illness/pain narrative. This may be achieved using Giles Deleuze’s creative stuttering to reimagine narrative form, producing the chronic illness narrative as described by Kathlyn Conway. By exposing the silenced realities of chronic illness/pain, the chronic illness narrative can pave the way for individual healing of the self, and furthermore, the large-scale rectification of cultural delegitimization of chronic illness/pain.

 

Works Cited

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Barker, Seamus, and G. Lorimer Moseley. “The Difficult Problem: Chronic Pain and the Politics of Care.” AQ: Australian Quarterly, vol. 87, no. 3, Australian Institute of Policy and Science, 2016, pp. 8–17.

Conway, Kathlyn. Beyond Words: Illness and the Limits of Expression. University of New Mexico Press, 2013. Project MUSE, http://muse.jhu.edu/book/22949.

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Sheppard, Emma. “Chronic Pain as Emotion.” Journal of Literary & Cultural Disability Studies, vol. 14, no. 1, Liverpool University Press, 2020, pp. 5–20.

Whitcomb, Isobel. “My Doctor Told Me My Pain Was All in My Head. It Ended Up Saving Me.” Slate Magazine, 10 Feb. 2021, https://slate.com/technology/2021/02/chronic-pain-neuroscience-education-running-joy.html.

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