Undercared-for Chronic Suffering: Experiences with Medically Unexplained and Contested Illnesses and Symptoms

Submitted by Christina LaVecchia, PhD

Medically unexplained and contested illnesses have long been a subject of interest—not only to those directly experiencing this form of suffering or caring for those who do, but also to the public at large.

Take, for instance, the 2018 Netflix docuseries Afflicted. The series portrays the experiences of people with misunderstood and stigmatized diagnoses and soon after its release was criticized by those it portrayed and by their families and caregivers as “craft[ing] the most sensationalist narrative possible” through “errors, manipulations and omissions of the [series’] edit.” Moreover, as Solona Armstrong wrote in a Medium review of the docuseries, “I would summarize the obviously biased message the film sent its audience with one phrase, spoken in the film by Dr. Friedman: ‘You can be deluded that you’re sick’.”

If these claims (about the handling of the stories on Afflicted) are true, then the show’s producers likely thought viewers would be easily persuaded that people are making these illnesses and symptoms up in their heads. Put another way, such misrepresentations are in themselves a larger cultural trope, revealing just how routinely the people suffering these illnesses and symptoms are seen as liars, frauds, and/or emotional manipulators. Also revealing of larger patterns: the significant harassment endured by those portrayed on the documentary (see, for example, Pilar’s story).

Struggles with legitimacy and stigma are also depicted in the award-winning 2017 documentary Unrest by Jennifer Brea. The film’s origins lie in Brea’s difficulty communicating the depth and severity of her symptoms to her doctors before she was diagnosed with chronic fatigue syndrome/myalgic encephalomyelitis. For Brea the camera became a mechanism to communicate her experience and navigate frustrating, at times dismissive, care. (For yet another example of creative attempts to help clinicians understand patient experiences, see designer Katie McCurdy’s visualizations of symptoms and heal th histories for patients with “rare or mystery” conditions.)

Such struggles with stigma and legitimacy aren’t just an unfortunate side-effect of living with these difficult-to-diagnose and difficult-to-treat illnesses but rather what is most at stake. As one commenter wrote on the PBS webpage for Unrest, “There is an argument about nomenclature and diagnosis, but it’s for another film and another battle. It’s more important to lose the stigma first, because the prejudice of clinicians is what’s killing us, not the name.” These are the stakes behind a qualitative systematic review and thematic analysis underway in the KER Unit (the full protocol has been registered with PROSPERO, CRD42019122506).

Our review explores what we have termed undercared-for chronic suffering: the experiences of patients, clinicians, and caregivers with chronic conditions and/or symptoms that (1) do not lend themselves to clear imaging, measurement, and/or treatment and (2) are characterized by long, expensive, and potentially confusing or conflicting diagnostic journeys. We offer the term undercared-for chronic suffering to bring focus and legitimacy to patients’ experiences with these conditions/symptoms and lessen the focus on their unclear scientific diagnosis.

Our analysis of our included studies is still in progress, but we anticipate that our thematic synthesis will include experiences like the following, which we observed in our preliminary manual searches on the topic:

patient perceptions of or attitudes toward their conditions, symptoms, and related experiences;
effects on patients’ lived experience (functionality, self-management, finances/occupation, social relations, etc.);
clinicians’, patients’, and/or caregivers’ perceptions of, experiences with care (communication, diagnostic process, conflicting/confusing information, continuity and integration issues, feeling doubted/unimportant/dismissed, feeling powerless/frustrated, etc.);
clinicians’ attitudes toward patients with these symptoms/conditions.

We aim to describe the contributors to patients’ experiences of undercared-for chronic suffering (positive and negative), as well as the experiences of the clinicians who treat and caregivers who care for this patient population. In doing so, we hope to understand the elements of patient support that can mitigate its well-documented propensity for frustrating conversations (and relationships) between patients and clinicians, difficulties with self-management and treatment, and patients’ feeling misunderstood, unimportant, and/or delegitimized.

References

Christina M. LaVecchia, Ph.D., earned her doctorate in rhetoric and composition and is a research fellow in the KER Unit who specializes in qualitative research. She uses her rhetorical training to collaborate on patient-centered research related to patient-clinician communication (particularly rhetorical listening practices) and the social experiences of patients with illness and navigating the power differentials that inflect their care—like those experiencing undercared-for chronic suffering.