Blog by Bryna Siegel Finer, Cathryn Molloy, and Jamie White-Farnham
Patients suffer when they do not get the information and support that they need—particularly when they are faced with a health flashpoint, which we define in our work as a new diagnosis, a flare or worsening of an existing condition, or the point at which a person enters a new phase of development. For example, a person who’s been newly diagnosed with breast cancer may not have the information they need to consider all treatment options available. A person grappling with an acute phase of a substance use disorder may not get the support they need to seek help. And a woman entering perimenopause may not have the information and support needed to cope with symptoms. In this post, we talk about a project we’re undertaking in which we engage in medical inquiries that meaningfully intervene in the sources of information and forms of support patients need, and our project provides cases that highlight this feature of the fields of both Rhetoric of Health and Medicine and Medical Humanities. This project, titled Patients Making Meaning: Theorizing Sources of Information and Forms of Support in Women’s Health, will be published as a book later this year (as part of the Routledge Studies in Rhetoric and Communication series). Like others in the medical humanities, we combine textual inquiry with social scientific research and creative expression to offer insight into the human experiences of grappling with various and often overlapping health realities. Our project relies on rhetorical frameworks to first describe what we call the “cycle of patient epistemologies” (described in detail below) and then to suggest directions advocacy work might take in relation to sources of information and forms of support in health. Through focus group research with breast cancer patients, for example, we learned that some women are not given information about flat closure and are, instead, given a lot of information about flap reconstruction versus breast implants. At that vulnerable and affectively charged time of trying to make a critical health decision, not having information on flat closure options led some women to make a choice they later regretted. Similarly, our focus groups showed that some of the go-to ways that many of us offer support to loved ones with cancer (brining oven-ready pasta meals, for example) are not as desirable to patients as offering help with childcare would be.
Thus, our project examines how people get (or, too often, do not get) the information and support they need to make meaning from their health experiences and to ameliorate suffering that results from inadequate information and support. While some may experience long stretches of wellness, most of us will, instead, experience some stages of wellness that are interspersed with various health flashpoints—sometimes a new diagnosis, sometimes a reoccurrence or worsening of an existing condition or the progression of a natural process. These health flashpoints have the potential to alter our affective, cognitive, and physical landscapes forever. As the women in the breast cancer focus groups that are part of this project make clear, far from the linear narrative arc from diagnosis to wellness, their experiences of/with breast cancer treatments have forever altered them. Menopause, another focus of our project, constitutes a life-altering transition; substance use disorder, a third area we explore, creates a wide variety of changes in and for the individual sufferer. Thinking of these health flashpoints as constitutive pieces of human life that involve affect-laden rhetorical work and cyclical, frenetic activity help us to better articulate the sources of information and forms of support that could be most advantageous. Our project includes focus group research, survey research, autoethnography, and textual analyses. Through these data sources, we developed the theory of a cycle of patient epistemologies.
Here is how our theory of patient epistemologies works:
- The first part is the health flashpoint itself, which can bring in fear, shock, confusion, physical and emotional pain, and is often unable to be extracted as a stand-alone experience bound up as “health news” always is in medical and other discourses that shape understandings upon delivery
- The second part is the rhetorical encounter, or sometimes head-long collision with collections of discourses associated with and creating the reality of a particular realm of disease, condition, or treatment. For an example drawn from our study, entering at least partially indeterminate states of being such as perimenopause also means entering a decades-long discursively shaped reality which paints the experience of menopause as no different for women in 2022 than it was in 1990.
- The third part is rhetorical work, including looking for and reading information (or sometimes actively ignoring information on purpose out of fear or denial), thinking, weighing options, recapitulating and synthesizing information that has been gathered from various sources, passive and agentive decision-making, devising systems to share information with others, etc.
- And, lastly comes reflection, which includes time, purposeful attempts to ponder, accidental realizations and learning, talking with others (whether professionals, other patients, or loved ones), as well as writing.
While these have, in our experiences and in the lives of our participants, loosely unfolded in order, they also often overlap and collapse in on one another more than they have neat starts and stops of their own. Of course, these cycles compound and intersect as life goes on, and as many of us know, one health flashpoint doesn’t always complete a cycle before another comes along, or some health flashpoints occur simultaneously. We are excited to share more of what we have learned through working on this project with the medical humanities community in the coming months. Please learn more about our project at https://patientsmakingmeaning.com/.
Bryna Siegel Finer is Professor of English and the Director of Writing Across the Curriculum at Indiana University of Pennsylvania.
Cathryn Molloy is Associate Professor and Associate Director of James Madison University’s School of Writing, Rhetoric and Technical Communication.
Jamie White-Farnham is Associate Professor of Writing and Director of the Center for Excellence in Teaching and Learning at the University of Wisconsin-Superior.