Contested or invisible illnesses, such as some autoimmune diseases, multi-chemical sensitivity, and chronic Lyme disease, are characterized by the difficulty in identifying biological markers of pathology. These illnesses manifest in symptoms (i.e., subjective, embodied sensations) rather than objective, pathophysiological signs, making them difficult to quantify and verify objectively, according to the expectations of biomedicine (Malterud 603). Therefore, these illnesses often generate tension and, sometimes, discrepancy between the physician’s expert authority and the patient’s experiential authority. Authors of memoirs about contested illnesses tend to report experiences of not being believed or having their symptoms dismissed as cases of hypochondriasis or hysteria, that is, their symptoms are deemed to be the product of their imagination. The result of this tension is that contested illnesses are conditions that patients had to “fight to get” (Dumit 577) to enter the sick role model. Here, I would like to offer a tentative hypothesis that considers some sociocultural, narrative, and linguistic explanations for the sense of disbelief that these patients report facing. I argue that the seemingly unbelievable accounts of these patients are constrained by what sociolinguist William Labov calls “the reportability paradox” (8).
Labov observes that the narrator needs to capture the listener’s attention to transfer experience effectively to others. To do this, the narrator must report an event that warrants its reportability (i.e., an out-of-the-ordinary event). The out-of-the-ordinary event is the event that makes the story worth telling, and it is called “the most reportable event” (406). However, paradoxically, the more reportable the event in the narrative, the less credible it will be. Thus, a patient who reports experiencing a bitter taste in her mouth, concomitantly with body aches that feel like being stabbed and the sensation of ice dripping in her brain, indeed has a reportable account, but one that seems unbelievable (i.e., the product of her imagination) and non-doctorable. Like fiction, this patient’s account is unfalsifiable. Although the physician may be challenged to find a biological referent or a disease category that matches the symptoms, the patient’s account cannot be disproved either.
Furthermore, such an account breaks with what sociologist Harvey Sacks calls the “ordinary cast of mind” (424). Sacks explains that given that we do not have access to the subjective experience of others, society highly regulates accounts of personal experiences. To be seen as rational, and therefore credible, speakers must report the experience of out-of-the-ordinary events as if they were ordinary; they must normalize the storytelling of those events. However, I contend that some manifestations of reality, including illnesses, may challenge the narrator’s ability to normalize their story. Patients who suffer contested illnesses may not always be able to normalize their experiences as ordinary illnesses precisely because their conditions challenge conventional social and biomedical expectations about ways of being sick in our Western culture. Some ways of being sick are just more conventionally acceptable than others.
The selected fragment from the Australian author Diane Crumple illustrates this predicament. It corresponds to her autobiography Chemical Crisis: One Woman’s Story, Humanity’s Future?
Strange sensations came and went. Food would suddenly taste bitter. Pain would stab up my legs as if steel rods were being hammered up my bones. My throat was forever sore, my lymph glands tender and swollen. Tingling, burning, and numbness developed in my hands and feet, and my skin crawled as if invaded by a million ants. Strangest of all was a crazy feeling, like ice-melting and trickling deep into my brain. I went shopping in winter in shorts and a T-shirt and shivered on a summer’s day. (Crumpler 25)
Crumple’s account challenges the delicate balance between reportability and reliability, especially for those unfamiliar with the symptoms associated with multiple-chemical sensitivity. In a close reading of the fragment, we notice the use of figurative language to describe symptoms concerning the senses of taste and touch. Whereas adjectives such as “tingling,” “burning,” and “numbness” tend to be conventionally accepted in the repertoire of symptoms, the metaphors she uses to describe her pain by reference to sharp objects, such as “knives” or “steel cables,” or even tools like “hammers” are less conventional. Likewise, the image of “ice” melting and dripping in her brain is even less conventional and it is more likely to have been excluded from her medical record as unmatchable with conventional symptoms.
Crumple’s ice-melting sensation could be associated with the experience of the incredible and fantastic (Todorov) and even with the way we read literature. We know there is no factual correspondence to her description; no literal ice is dripping in her brain. Yet if we suspend disbelief, we can appreciate that the description is, instead, the linguistic formulation of her subjective experience—her narrative truth. If Crumple cannot normalize her symptoms, it might be because the reality for her may seem more disconcerting than is conventionally accepted and expected from narratives of experience (i.e., nonfictional). The cultural and linguistic conventions to articulate her symptoms still have to be conventionalized by society, like linguistic varieties eventually conventionalized into standard languages (Aronowitz 803). Crumple’s condition does not yet fit the etiology of disease specificity, and multi-chemical sensitivity has not made it yet into an established disease category. However, given the speed of global warming on our planet, there is a possibility that one day, her account might be accepted as normal. Metaphors create realities, as Lakoff and Johnson assert (156).
Notwithstanding, patients have the visceral need to account for their illness experiences. For this purpose, the patient, as a poet, may appeal to their linguistic creativity to find similar references to the real world with which to compare an internal and unfamiliar experience. The only difference between metaphors such as “ice melting and trickling deep in [one’s] brain” and “brain fog” is that the latter has entered the dictionary of conventional symptomatology by virtue of the weight that COVID-19 and long COVID have imposed on our world. Thus, I suggest that if Crumple’s illness narrative seems incredible, it is because it is indeed the product of her poetic imagination that must account for an out-of-the-ordinary personal experience without conventional terms to present herself as credibly sick.
A possible antidote to these unbelievable narratives might be to listen to them as the reader of fiction, who agrees to suspend disbelief while reading/listening. Like the reader who momentarily forgets the Hegelian aphorism, “The real is rational and the rational is real.” In that state of mind, we know that the narrative lacks matching referents, yet we step into the truth of the story. So, we may be moved by it and into action to investigate the medical meaning behind that patient’s narrative.
Image Credit: Magrath, Stephen. “Left and right brain functions.” License CCO.1.0 Universal. Source: Wellcome Collection.
Works Cited
Aronowitz, Robert A. “When Do Symptoms Become a Disease?” Annals of Internal Medicine, vol. 134, no. 9, 2001, pp. 803–08.
Crumpler, Diana. Chemical Crisis: One Woman’s Story, Humanity’s Future? Scribe Publications, 1994.
Dumit, Joseph. “Illnesses You Have to Fight to Get: Facts and Forces in Uncertain, Emergent Illnesses.” Social Science and Medicine, vol. 62, 2006, pp. 577–90.
Labov, William. “Some Further Steps in Narrative Analysis. Oral Versions of Personal Experience: Three Decades of Narrative Analysis.” Special issue of Journal of Narrative and Life History, vol. 7, no. 1–4, 1997, pp. 395–415.
Lakoff, George, and Mark Johnson. Metaphors We Live By. University of Chicago Press, 1980.
Malterud, Kirsti. “Symptoms as a Source of Medical Knowledge: Understanding Medically Unexplained Disorders in Women.” Family Medicine, vol. 32, no. 9, 2000, pp. 603–11.
Sacks, Harvey. “On Doing ‘Being Ordinary.’” Structures of Social Actions: Studies in Conversation Analysis, edited by Maxwell J. Atkinson and John Heritage, Cambridge University Press, 1984, pp. 413–29.
Todorov, Tzvetan. The Fantastic: A Structural Approach to a Literary Genre. Translated by Richard Hower, The Press of Case Western Reserve University, 1973.