Blog by Leah Teresa Rosen
“Invisible illnesses”—like chronic pain, fibromyalgia, and other conditions that cannot be reliably measured or quantified—present a unique challenge to clinicians and caretakers alike. In American culture, we operate under the idea that seeing is believing, almost to a fault. We should not have to witness or experience something first-hand before taking it seriously; instead, we should trust, honor, and operationalize the first-person accounts relayed by others. This idea holds for life in general—who doesn’t want to be heard and believed?—situations of racial and social injustice; and at the center of this blog post, the way we care for patients with invisible illnesses. Because when it comes to supporting patients with mental or otherwise unseeable conditions, the traditional toolbox of medicine falls short. A physician cannot detect depression with a stethoscope, or even diagnose cluster headaches through medical imaging. But this shortcoming of the medical toolbox is no excuse for the inadequacy of patient care.
That which cannot be seen must be heard.
In the field of narrative medicine, we work to promote the following standard of humanistic, person-centered care: physicians have a moral and professional responsibility to honor a patient’s story. For, captured within a patient’s story is the first-person, embodied perspective of what it means to suffer from what others cannot see. And despite the clinical realm’s tradition of privileging the quantitative over the qualitative, for patients with invisible illnesses, qualitative evidence is the only window into their suffering. By extension, the only window into their care.
To be sure, the eliciting and honoring of patient stories is not only about providing more compassionate, comprehensive care; it is a matter of healthcare access. Whose stories are heard? Whose stories are believed? These are the questions that sit at the center of narrative medicine, and they force us to acknowledge how some patient testimonies go unheard, unbelieved.
Testimonial injustice is one of the many forces to blame. First defined by social philosopher Miranda Fricker, testimonial injustice occurs when the prejudice of a listener determines the perceived credibility of a speaker (Fricker, 2009). For the purposes of my argument, the listener would be the physician while the speaker would be the patient. Testimonial injustice could, in theory, act in favor of the patient, if the physician were to hold positive stereotypes in mind about the patient’s identity. But more often than not, testimonial injustice has the opposite effect: acting to deflate a patient’s credibility, especially if that patient belongs to a marginalized community.
Testimonial injustice is a systematic issue that plagues both the medical realm and wider society, and it particularly harms patients with invisible illnesses. These illnesses, which cannot be seen by others but are indeed felt by the patient, present a situation in which testimony is relatively more important. After all, if there are no labs that can be used to detect an illness, and nothing in a patient’s physical exam seems wrong, the patient’s testimony is the main piece of evidence. So if the testimony goes ignored, dismissed, or even marginally undervalued, that would be a serious violation of care—and relatedly, the patient’s rights.
Therefore, all providers—but especially those who treat patients with invisible illnesses—should be trained in the various manifestations of testimonial injustice. Without being aware of what this form of injustice looks like, they are unable to identify it in their own practice, or that of their colleagues. As early as medical school, physicians-in-training should commit themselves to practicing testimonial justice. On a curricular level, this would mean expanding the locus of their clinical attention: focusing not only on what can be seen on a patient’s body or chart, but also listening for what can be heard in the patient’s story.
One way of teaching this skill is through the approach of narrative humility. Originally theorized by physician and writer Sayantani DasGupta, narrative humility is a clinical competency described as:
“acknowledging that our patients’ stories are not objects that we can comprehend or master, but rather dynamic entities that we can approach and engage with, while simultaneously remaining open to their ambiguity and contradiction, and engaging in constant self-evaluation and self-critique about issues such as our own role in the story, our expectations of the story, our responsibility to the story” (DasGupta, 2008, p. 981).
By centering themselves in narrative humility, providers can refocus their approach on openness—thus making it less likely they will jump to prejudicial conclusions about a patient, and helping them instead frame the clinical encounter as an opportunity to learn something new from each patient.
Persons who suffer from invisible illnesses are the most reliable source of embodied knowledge on the illness itself. But many of their voices have bene silenced due to testimonial injustice. In the words of feminist philosopher Nancy Tuana, “shifting attention to this neglected area of concern through the lens of the experiences of [marginalized persons] serves to transform both who knows and what is known” (Tuana, 2017, 128). To strengthen our clinical understanding of invisible illnesses—the what—we need to ask the patients themselves—the who—and we must genuinely listen—the how.
1. Fricker, Miranda. (2009). Epistemic Injustice: Power and the Ethics of Knowing. Oxford University Press.
2. DasGupta Sayantani. (2008). Narrative humility. The Lancet, 371.
3. Tuana, Nancy. (2017). Feminist epistemology: the subject of knowledge. In I.A. Kidd, J. Medina, & G. Polhaus Jr (Eds.), The Routledge Handbook of Epistemic Injustice (pp. 125-139). Taylor & Francis.
Leah Teresa Rosen is a student in Columbia University’s Program in Narrative Medicine. Her work at the intersection of the humanities, medicine, and social justice has appeared in Scientific American, Please See Me, and Synapsis.