Delegitimation of Chronic Pain and Contested Illnesses: Part I
Delegitimation of Chronic Pain and Contested Illnesses: Part I
In November 2019, the Twitter hashtag #PatientsAreNotFaking suddenly began flooding the Internet. The hashtag, catalyzed by disability rights activist and blogger Imani Barbarin (a.k.a. Crutches&Spice), was created in response to a viral TikTok video titled, “We know when ya’ll are faking” (Rose, 2019). The video’s creator, a real-life healthcare worker, pretends to be a hospital patient dramatically faking shortness of breath. Interwoven are clips of a skeptical nurse, also played by the creator, dancing around in mockery of the faking patient. The caption, “We know when ya’ll are faking,” brings the message home loud and clear: patients are deceitful and cannot be trusted.
Despite the creator’s protests that the video is a harmless joke, countless Twitter users swiftly claimed the #PatientsAreNotFaking hashtag, sharing deeply intimate accounts of medical abuse, discrimination, permanent injury, and deaths of loved ones resulting from disbelief and neglect of their pains and illnesses (Rennex, 2019). The incidence of healthcare workers not believing their patients is so pervasive that some physicians even used the #PatientsAreNotFaking hashtag to speak out about offenses they had witnessed committed by their own colleagues.
However, despite repeated research findings to the contrary, the widely believed prejudice that people who have chronic pain and illness are prone to exaggerate, overreact, falsify information, fake, and attention-seek has its grip firmly on the cultural consciousness of the colonized west (Jackson, 2011). Like most prejudices, the belief that people who have chronic pain cannot be trusted to reliably narrate their experiences is rooted in deeper and much more elusive stigma.
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Prior to the rise of biomedicine in the 19th century medical practitioners had very little information to work with aside from what could be easily detected, which meant that taking a comprehensive history and intently listening to patients’ accounts of what was ailing them was of the utmost importance (Goldberg, 2017). Without the medical technology we are used to today, these patient narratives represented the bulk of information used to diagnose and treat illnesses. However, with advances in scientific technologies, the value and authority of self-described patient experiences were largely taken over by medical testing and the people interpreting these tests: namely white, cisgender male doctors.
Before the proliferation of biomedicine, nearly all health conditions were not readily visible. As such, particular diagnostic or cultural significance was not associated with whether or not the cause of an injury or illness could be visually identified. With the shift to biomedicine’s focus on identifying visible and “objective” pathologies, illnesses that are not visible and do not resolve with acute treatment became the object of cultural skepticism and scrutiny as to the realness of the reported symptoms and the extent of their severity.
The narrative expectation that all real diseases can be identified, treated, and cured through biomedical science swiftly wove itself into the fabric of western culture. Being redeemed through diagnosis and subsequent cure or through personal ascension in the face of illness became tantamount to a cultural imperative. However, chronic pain experiences, which have long been a target for unfounded meanings, violate this narrative expectation of redemption through restored health (Wasson, 2018). Where illnesses that lend themselves to timely and concrete resolution are privileged in the west, the indefinite, fluctuating nature of chronic pain and illness is perceived as deceptive (Jackson, 2011).
There are indeed qualities unique to chronic pain, such that it is:
Immensely powerful yet difficult to control;
Virtually undetectable, with an almost supernatural or metaphysical presence, i.e. “phantom” pain;
An ambiguous, liminal existence suspended between “health” and “illness,” and “mind” and “body.”
In contrast to the conventions of how illness “should” operate based on an acute model that promises cure and recovery, these elusive qualities of chronic pain are regarded as a threat to the perception of absolutes and certainties that are held so dear in the west.
Additionally, given that significant variance in the breadth, severity, and experience of chronic pain and illness exists even within the same diagnosis category, experiences of chronic pain further complicate the foundations of order and control that biomedicine champions (Good et al., 1992). For example:
There is no definitive medical reason why one person develops chronic pain and another does not;
Chronic pain is frequently debilitating but rarely fatal;
No uniform diagnostic profile for chronic pain exists—how the pain is experienced to what physiological signs are present are different depending on the person and circumstance;
The intensity and qualities of pain such as sharp, burning, pulsing, dull, crushing, and so on are widely variable, individual, and often unpredictable;
Chronic pain is a disease process, but a person can be perfectly “healthy” by all allopathic medical accounts and measures.
These features of chronic pain expose the fallibility of the dichotomies in which allopathic medicine locates its authority. Where cleaving to binaries such as sick/well, healthy/diseased, fit/unfit, normal/aberrant, whole/broken, mind/body, strong/weak, ill/healed, deviant/pure, and truth/lie is favored in the west, chronic pain experiences disrupt these dichotomies, and are therefore prone to being appraised as deceitful (Good et al., 1992).
In The Wounded Storyteller: Body, Illness and Ethics Arthur Frank (2014) describes illness narratives as falling into one or more of three categories: the restitution narrative, quest narrative, and chaos narrative. In the restitution narrative, illness is conceived of as a temporary state on the way to being restored to health. In the quest narrative, redemption is sought by grappling with experiencing illness to achieve greater life meaning. Both narratives are characterized by their progression toward an ordered endpoint, such as a cure or reconciliation with the experience of illness.
In the chaos narrative, however, experiencing illness continuously interrupts cohesion, order, and meaning. Chronic pain experiences epitomize the chaos narrative in that chronic pain is largely defined by its very lack of order (Jackson, 2011). This endless, disjointed experience of illness that exemplifies many chronic pain conditions is culturally cast as not only a failed narrative arc, but also a failure of personal integrity.
The precept that an illness is acceptable only if the person’s experience reflects a certain narrative formula of progress propels judgments that people with chronic pain and illnesses are crying wolf or exaggerating because symptoms do not match cultural conceptions of how “real” illnesses present, develop, and resolve (Frank, 2014).
By simply existing without a concrete resolution to pain and illness, people in pain threaten the mythology of “overcoming” and “rising above” that propels the much-cherished individualistic western belief system that there are no limits if one tries hard enough (Wasson, 2018). But as with other marginalized groups that face enormous systemic and structural barriers, for those of us who live with chronic pain and illness trying hard enough is not a solution. As such, people in pain are culturally cast as narrative, and social, deviants. Not only is our experiencing chronic pain stigmatized, but our very lives are perceived as invalid.
Narrative invalidation is not only demoralizing, but also poses dire consequences for many of us living with chronic pain and illnesses. Historically, medical establishments and their agents have led the explicit and implicit stigmatization of the narratives of people who have chronic pain and illness. For those of us who have contested diagnoses or “waste basket” conditions, as some medical providers call illnesses they erroneously believe are unreal, the incidence of medical denial of our narratives leading to disbelief from loved ones, and social marginalization, is perilously high.
Check back on April 5, 2022 for Part II about narrative invalidation of chronic pain and contested illnesses by the medical establishment.
For more of my original articles, check out these posts:
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Sources
Frank, Arthur W. The Wounded Storyteller: Body, Illness, and Ethics. Univ. of Chicago Press, 2014.
Goldberg, Daniel S. The Bioethics of Pain Management: beyond Opioids. Routledge, 2017.
Good, Mary-Jo DelVecchio. Pain as Human Experience: an Anthropological Perspective. Univ. of California Press, 1992.
Jackson, Jean E. “Pain and Bodies.” A Companion to the Anthropology of the Body and Embodiment, 2011, pp. 370–387., doi:10.1002/9781444340488.ch21.
Rennex, Michelle. “#PatientsAreNotFaking Is Trending After A Skit Of A Nurse Mocking Patients Went Viral.” Junkee, 25 Nov. 2019, junkee.com/patients-are-not-faking/231772.
Rose, D. “We Know When Y'all Are Faking.” Twitter, 19 Nov. 2019, twitter.com/damndrosetweets/status/1196804341753139200?lang=en.
Wasson, Sara. “Before Narrative: Episodic Reading and Representations of Chronic Pain.” Medical Humanities, vol. 44, no. 2, 2018, pp. 106–112., doi:10.1136/medhum-2017-011223.
