Interrogating Gendered Pathologies

Erin Clark, Michelle F. Eble, Erin Clark, Michelle F. Eble

• Publisher: Utah State University Press
• Year: 2020
• ISBN:
  9781607329855
• Topic: Languages & Linguistics
• Subtopic: Linguistics
• Index: Languages & Linguistics

Interrogating Gendered Pathologies points out and critiques unjust patterns of pathology. Erin A. Frost and Michelle F. Eble assemble a transdisciplinary approach from/to technologies, rhetorics, philosophies, epistemologies, and biomedical data to consider the effects of biomedicine's gendered norms on people's lives. Using a range of complementary and intersectional theoretical approaches, contributors ask questions about rhetoric's role in healthcare and how it differs depending on patient embodiment and the ways nonnormative bodies are pathologized.
 
These chapters engage common narratives about the ways in which gender in healthcare is secondary and highlights the stories of people who have battled to prioritize their own bodies through extraordinary difficulties. Employing a multiplicity of voices, the book represents a number of different perspectives on what it might look like to return health and medical data to embodied experience, to consider the effects of gendered and intersectional biomedical norms on lived realities, and to subvert the power of institutions in ways that move us toward biomedical justice.
 
This collection contributes to the burgeoning field of health and medical rhetorics by rhetorically and theoretically intervening in what are often seen as objective and neutral decisions related to the body and to scientific and medical data about bodies. Interrogating Gendered Pathologies will be of interest to feminist scholars in the field of rhetoric and writing studies, specifically those in the rhetorics of health and medicine, as well as scholars of technical communication, feminist studies, gender studies, technoscience studies, and bioethics.
 
Contributors: Leslie Anglesey, Mary Assad, Beth Boser, Lillian Campbell, Marleah Dean, Lori Beth De Hertogh, Leandra Hernandez, Elizabeth Horn-Walker, Caitlin Leach, Jordan Liz, Miriam Mara, Cathryn Molloy, Kerri Morris, Maria Novotny, Sage Perdue, Colleen Reilly
 

Section II

Patienthood and Patient-Provider Communication

3

“We’re All Struggling to Be a Complete Person”

Listening to Rhetorical Constructions of Endometriosis

Leslie R. Anglesey

DOI: 10.7330/9781607329855.c003

Doctor and patient approached each other with an agenda that they wished to articulate in the consultation. The implicit question, “are you listening to me?” turned into a symmetrical struggle for the role of the speaker.

—Dianna T. Kenny

Introduction

If you were to ask me to describe the pain I experience because of endometriosis in six words, I would say something like this: surprise, wrenching, intense, unbearable, searing, and alone. If you were to look through my chart for the same question, you might find a list with terms like “chronic pelvic pain in female” and “dysmenorrhea.”1 Of course, no healthcare professional has asked me this question, but this simple exercise highlights one of the greatest challenges faced by female patients. While both lists attempt to capture the pain associated with endometriosis, they communicate the experience in vastly different ways because, as the epigraph to this chapter suggests, doctors and patients have their own agendas for each consultation (Kenny 2002, 297). Patient agendas range widely. At times, patients seek validation; other times, patients like Shelley Raymond seek a diagnosis. Raymond revealed that in the moment she was finally diagnosed with the condition, she experienced relief; as she recalled, “The diagnosis didn’t heal the pain. But after all these years of living with the unknown, a doctor had finally put a name to what was wrong with my body” (Kirkey, Ottawan Citizen, August 7, 1992).

These agendas (always personal, always political) do not, however, always align with the agendas of doctors, which are framed by the doctor’s own political and personal experiences, beliefs, and knowledge sets. Because these agendas are often at odds with one another, it follows that one party is likely to lose out in controlling what happens when doctors and patients meet. For example, the woman knows she is in pain and, therefore, that something is wrong based on her experience of the pain. However, Western medicine trains doctors to look for the etiological causes of pain: a pinched nerve, internal bleeding, a broken bone, an ectopic pregnancy, and so forth. Even when some doctors “believe” their endometriosis patients’ subjective self-reports, their medical training requires them to seek physical evidence.

Endometriosis, as I demonstrate in this chapter, poses significant challenges to medical professionals and patients alike. Because patients and doctors have different beliefs about the nature of a female patient’s pelvic pain, it can be difficult for both parties to construct endometriosis-related pain in mutually intelligible ways. Increased attention to medical discourses of endometriosis, and female pelvic pain more broadly, is fraught with social assumptions and consequences. I explore my own experiences as a patient with endometriosis in order to trace how medical discursive practices and assumptions about the pain experienced by women dislocate female patients as authorities over their own bodies. I conclude with a brief exploration of the ways narrative medicine may assist gynecological practices in incorporating the voices of female patients.

Connecting Epistemology and Pathology

To begin this chapter, I highlight an important tension between female epistemology and pathology by discussing the varying epistemologies of female pelvic pain, or the ways the very nature or existence of such pain is understood. As I argue throughout this chapter, female patients’ day-to-day reality is informed by bodily knowledge and their experiences with pain that interferes in their ability to carry out various tasks. To live with chronic pain is to experience pain as a salient factor of daily life. This patient epistemology, rooted in experiential knowledge, sits in opposition to the medical establishment’s ontology of chronic female pelvic pain, which is based on an ability to determine a pathogenesis. Pathogenesis in the case of endometriosis is achieved by visualizing lesions and implants, which is currently only accomplished through surgery. Given the high costs of surgery, doctors are not quick to do exploratory surgery to diagnose endometriosis. The delay in diagnosis keeps women’s pain pathologically unreal and perpetuates, as Margrit Shildrik (1997) suggests, “the standards of an objective, universalized body” (76). Because of the reliance upon notions of an idealized, “healthy” female body and assumptions about the kinds of pain women are expected to deal with, women are dislocated from their status as authorities about the pain they experience regularly.

Women have trouble discussing pain because their access to tools for reporting their pain (narratives) are coded within mainstream Western medicine as feminine practices. Thus, female patients with complaints of chronic pelvic pain are doubly gendered as they use discursive practices coded as feminine to talk about “womanly” pain, which is often received as hysteria (see next section). As the account of Shelley Raymond earlier in this chapter suggests, many doctors are quick to dismiss women’s complaints of pelvic pain as illegitimate. She was told there was nothing wrong with her except that she was “‘high strung’” (Kirkey, Ottawan Citizen, August 7, 1992). But Raymond is not alone. Heather C. Guidone, another woman diagnosed with endometriosis, once explained doctors often told her “‘periods are supposed to hurt. It’s a woman’s lot in life to suffer’” (Glenza, Guardian, September 8, 2015). Another woman, who wished to remain anonymous, noted that a doctor dismissed her: “At one point [the doctor] told me I was a little girl who cried wolf, and one day I would be really sick and no one would believe me. And so I just kind of shut up” (Glenza).

These stories demonstrate the object, universalized female body Shildrik (1997) suggests. An objective understanding of the female body requires the regular experience of pelvic pain. It is thus natural and expected that women of childbearing age would experience pain, and because that pain is normalized, their reports of pain are most often filtered through the expectation that what they are experiencing is normal. Cara E. Jones’s (2016) discussion of the gendering of endometriosis, its pain, and diagnosis, is telling. She observes that because of the “gendered norms” surrounding women’s experience of pelvic pain, which make endometriosis pain “invisible in public discourse,” “those with endo symptoms must seek legitimization through diagnosis to achieve what little support is available from friends, family, and social systems” (556). These socially accepted norms force women to seek substantiation through the long and arduous road to diagnosing endometriosis. But even within medical contexts, women’s narratives of chronic pain must overcome substantial barriers in order to be listened to seriously.

To fully appreciate how these narratives are dismissed on the basis of a universalized, objective female body that experiences pain regularly, we can compare a woman’s report of pelvic pain against a man who might report pelvic pain to his doctor. Because pelvic pain is not read as a regular occurrence of the male body’s growth and development, any reports of pelvic pain by a man would be routed as symptomatic of something wrong with his body (prostatitis, appendicitis, diverticulitis, bowel obstruction, etc.), not something right (or at least something normal), as it is with women. Reports of pain by women are not dismissed only because of the ways female bodies are expected to experience pain but also because of the longstanding rhetorical figure of the hysterical woman, which is still prevalent in medical discourse today.

Methodologies

This chapter relies upon accounts of my own experiences with doctors. The decision to use my own experiences is not without political and methodological implications. However, part of my goal is to actively reorient the medical community away from large generalizations toward personal accounts. This reorientation must be done, in part, because the only record I have of most of my interactions with doctors are the copies of my charts provided to me, which by and large do not fully capture our conversations. Without traditional documentation, my experiences stand mostly as anecdotal evidence, which makes such data more difficult to generalize. However, the gaps in the “official” record of my past and ongoing treatments—the fact that I remain as a silent nonparticipant in my own charts, emphasizes the problem I address: namely, that female patients are nonauthorities on their own pain.

To highlight the issue of a woman’s silence in her records, I want to draw attention to differences between a woman’s absence in her medical records when she complains of chronic pelvic pain and a man’s absence in his medical records when also complaining of pelvic pain. While it may be easy to see these absences as equal, they are not. The difference between the records of pathology for the man and the woman is that the man’s reality of being in pain or the very reality of his condition is not likely to be challenged, whereas the woman’s will likely be. It’s not that a man will not use narrative to articulate his pain. The issue arises because a man is likely to be believed to have his condition, in part because his narratives about pain are easily corroborated by diagnostic tools; for a man presenting with pelvic pain, conditions like prostatitis, appendicitis, bowel obstruction, and diverticulitis can be diagnosed through urine samples (diverticulitis, prostatitis), CT scans (diverticulitis, appendicitis), and x-rays (appendicitis, bowel obstruction). His narrative accounts are made visible by diagnostic tools, and thus the absence of his voice does not illegitimate his claims of pain, whereas it can for a woman complaining of pelvic pain. On the other hand, a woman who reports pelvic pain may diagnostically appear healthy, which may make her narratives about pain more likely to be dismissed or read as exaggeration of normal female pain. Her absence from the medical records, then, constitutes an epistemological loss.

My attempts to reread my own experiences are examples of what Jacqueline Jones Royster and Gesa Kirsch (2012) have called reflective methodologies. Methods such as critical imagination and strategic contemplation, Royster and Kirsch (2012) argue, are central to feminist research. Critical imagination, for example, is a research tool for taking stock of what has been noticed and what has been unnoticed, a method for exploring why certain things are observed, and a technique for speculating about what could be (20). This research project would be incomplete without the ability to imagine the events of my own treatment and listen (in memory and in my charts) to what occurred and did not occur. To accomplish this task, I have taken care to ground my reflection in both the texts and contexts of the events (21).

As Royster and Kirsch (2012) further suggest, critical imagination is not a stand-alone method, and it is not treated as such in this project. I also employ what they call “strategic contemplation,” a process by which a researcher engages their research subjects in dialogue, even if only imaginatively. This engagement allows researchers to recover voices ignored or intentionally silenced and to more critically reflect on what the researchers’ own thoughts and interpretations of such silences may be. This process of listening, however, is complicated by the fact that I must alternately take upon myself the roles of researcher and subject. While it may be easy to see this dynamic as problematic, I view it as an opportunity. As Rita Charon (2006) has observed, an “autobiographical gap” is created “any time a person writes about himself or herself” (70). This gap allows the “narrator-who-writes and the protagonist-who-acts” to meet in a “reflective space . . . in a heightened way, revealing fresh knowledge about its coherent existence” (70). In other words, methodologies that meditate upon experiences from multiple (sometimes imagined) standpoints offer researchers opportunities to better understand the critical potential of events and provide subjects the opportunity to make sense of what they have experienced.

Endometriosis: A Case of Delayed Diagnosis

Because of the gendered nature of diagnosis and the pathologizing of women’s bodies, delays in diagnosis of multiple conditions have been documented. As Kerri K. Morris’s chapter in this collection also demonstrates, the delay of diagnosis can be attributed to the gendered nature of medical diagnosis, even when the condition is common to both men and women, such as bladder cancer. Endometriosis, however, is an example of delayed diagnosis partially because it is a condition specific to female bodies, with only a few cases of endometriosis being documented in men (Jabr and Mani 2014). While not often discussed in popular culture, endometriosis is a serious and persistent chronic pain condition that effects an estimated 6 to 10 percent of women of reproductive age and up to 60 percent of women who suffer with pelvic pain (Giudice 2010, 2389). In addition to the primary symptom of pain, women with endometriosis also experience “immunological and gastrointestinal disorders, chemical sensitivities, and allergies” (Jones 2016, 555). In women with endometriosis, cells containing functional endometrial glands are found outside the uterus, typically within the abdominal cavity. The presence of these cells outside the uterus causes pain because they behave like the endometrial lining within the uterus; as a woman progresses through her monthly menstrual cycle, endometrial cells implant, thicken, and ultimately shed just like the endometrial lining within the uterus, resulting in bleeding and inflammation. Because these cells cannot escape the body after shedding, they develop over time into adhesions (Hogg and Vyas 2015). Endometriosis results in more common menstrual pain (pain before/during menstruation), as well as chronic pelvic pain throughout the month and painful intercourse (Giudice 2010; Hickey et al. 2014). The condition is not only a pain condition; many women with endometriosis als...

Table of contents

• Cover
• Title Page
• Copyright Page
• Dedication
• Contents
• List of Figures and Tables
• Acknowledgments
• Introduction: Interrogating Gendered Pathologies
• Section I: Sensory Experiences
• Section II: Patienthood and Patient-Provider Communication
• Section III: Social Construction of Illness/Biomedicalization of Bodies
• Section IV: Digital Medical Rhetorics
• Section V: Textual Examinations
• About the Authors
• Index