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Writing The Gap: The Role Of Clinician-Authored Narratives In
Writing The Gap: The Role Of Clinician-Authored Narratives In
Building Structural Competence And Situated Knowledge In
Building Structural Competence And Situated Knowledge In
Service Of Marginalized Patient Populations
Service Of Marginalized Patient Populations
Anusha Singh
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Singh, Anusha, “Writing The Gap: The Role Of Clinician-Authored Narratives In Building Structural
Competence And Situated Knowledge In Service Of Marginalized Patient Populations” (2020). Yale
Medicine Thesis Digital Library. 3952.
https://elischolar.library.yale.edu/ymtdl/3952
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Writing the Gap: The Role of Clinician-Authored Narratives in
Building Structural Competence and Situated Knowledge in Service of
Marginalized Patient Populations
A Thesis Submitted to the
Yale University School of Medicine
in Partial Fulfillment of the Requirements for the
Degree of Doctor of Medicine
and the
Degree of Masters of Health Science
By
Anusha Singh
2020
2
Abstract
This thesis analyzes clinician-authored narratives about mental illness. Through
this lens, it argues that the writing and reading of medical narratives can facilitate the
development of key clinical skills such as structural competence and situated knowledge
– terms that this thesis will define and discuss at length. It will argue that clinicians who
write about structural barriers to health do so to develop a deeper understanding about
their vulnerable and marginalized patient populations. It will assert that clinicians who
pursue situated knowledge can positively impact health outcomes. Ultimately, this thesis
will compare what clinician-authored narratives can achieve with what patient-centered
advocacy sets out to do. It will contend that writing is a tool for improving patient care
that has a different but vital function from the important work of advocacy.
3
Acknowledgments
I would first like to thank Dr. Anna Reisman for her willingness to guide me
through this project. The questions posed in this thesis motivated my decision to become
a physician. Dr. Reisman’s insight was instrumental in turning these broad philosophical
ideas about medicine into a thesis with specificity and purpose.
I would also like to thank the members of my thesis committee. Dr. Carolyn
Mazure for providing perspective informed by her expertise in gender and psychiatry and
connecting me to the Women’s Health Research network. Dean Nancy Angoff for
lending her expertise in writing and the intersection of the humanities and medicine to the
review of this thesis. Additionally, I would like to acknowledge Dr. Naomi Rogers from
the Program in the History of Science and Medicine at Yale School of Medicine for
graciously sharing her time and extensive knowledge of resources on multiple occasions.
Furthermore, this project would have remained impossible without the
participation of the narrative authors. I would like to thank Dr. Christine Montross, Dr.
Cassie Addai, Dr. Kamal Kainth, Dr. Sand Chang, and Dr. Kay Jamison for their time. It
was a privilege to discuss my thesis with each of them. Their narrative writing and our
conversations about narrative medicine were fundamental to developing the conclusions
of this thesis.
Finally, I would like to thank the Office of Student Research and the James G.
Hirsch, M.D., Endowed Medical Student Research Fellowship for their support of this
project.
4
Table of Contents
Foreword …………………………………………………………………………………5
Introduction……………………………………………………………………………… 9
–
The History of Hysteria
–
The History of the Diagnostic and Statistical Manual of Mental Disorders
–
The Biopsychosocial Model
–
The Utility of Clinician-Authored Narratives
Methods………………………………………………………………………………… 18
–
The Search for Primary Sources
–
The Process of Interviewing Authors
–
The Qualitative Analysis of Primary Sources and Author Interviews
Results………………………………………………………………………………….. 22
–
The Comprehensive List of Potential Primary Sources
Discussion……………………………………………………………………………… 23
–
The Biomedical Diagnosis of Mental Illness
–
Developing Structural Competence Through Narrative Writing
–
Building Situated Knowledge Through Narrative Writing
References……………………………………………………………………………… 67
Appendix……………………………………………………………………………….. 69
–
Twitter Search for Primary Sources
–
Research In Progress Presentation Slides
–
Christine Montross Interview – December 20, 2018
–
Cassie Addai Interview – May 17, 2019
–
Kamal Kainth Interview – May 22, 2019
–
Sand C. Chang Interview – November 1, 2019
5
Foreword
Learning about a patient’s illness experience is vital to the effective and ethical
practice of medicine. Before arriving at medical school, I had internalized this lesson
thanks to an undergraduate course called International Law and Global Health. Professor
Admay, or simply Admay as she preferred, was a career advocate for health as a human
right. A lawyer by training, she would argue the following: physicians, because of their
privileged access to the most vulnerable patients’ experiences, are morally obliged to
advocate on behalf of those patients. I remember the case study that followed this
statement with clarity. Admay described a Russian prison that housed inmates in
appalling, inhumane conditions in the dead of winter. The whistleblower who revealed
the human rights violations endured by these prisoners was the only outsider granted
access to the prison; he was their doctor.
The question compelled me. How, I wondered, should clinicians incorporate
advocacy into the doctor-patient relationship? Never did I question whether advocacy
belonged in medicine. It seemed irrefutable that some patients – perhaps due to their
demographic or social identities or the very illnesses they were battling – were vulnerable
to injustice and needed their physicians to be allies and advocates for their right to
healthcare. Given this circumstance, the choice between silence and action felt untenable.
I was convinced that the ethical practice of medicine required physicians who
acknowledge that they bear witness to the experiences of vulnerable, voiceless patients
and who recognize that this privilege comes with a responsibility to speak.
So, I decided advocacy was a natural extension of the physician’s professional
role. Physician failures in this role were most apparent in the realm of research. History is
6
riddled with landmark studies that either exploited the most vulnerable members of our
society or failed to include them in scientific and medical advancement. Notorious and
horrifying examples of exploitation include the Tuskegee Study or the forced sterilization
of black women in the 1980s. One contemporary example of exclusion is heart disease,
the leading cause of death in women. Despite this statistic, the presentation and treatment
of heart disease has been woefully understudied in gender and racial minority groups
alike.
Examples such as these have led to policy changes that require physicians to
design inclusive research studies. However, more than a change in policy, I wished for a
change in vision. Behind these studies were physicians who did not prioritize the right to
equitable healthcare. At worst, these physicians were informed by discriminatory and
racist ideologies. At best, they were indoctrinated into a narrow theory of scientific
inquiry that neglected the lived experience or diversity of their patients.
Arriving at medical school, however, I soon noticed that the role of advocacy in
medicine was controversial. Advocacy was not part of the culture of medicine, and many
physicians disagreed it needed to be. Faculty, residents, and medical students alike
emphasized the need for a narrow clinical scope in medicine. They argued that
physicians, in their limited time, already struggled to achieve clinical excellence. For
these physicians, advocacy was a political action rather than a professional responsibility.
My impression that physicians shared a belief in their professional duty to advocate for
equitable healthcare disintegrated. Now immersed in the culture of medicine, I too felt
the burden of competing demands on my time. It was a humbling moment of culture
shock.
7
How, in such an environment, could physicians create the space to reflect on their
patients’ experiences and discern opportunities to improve the system of clinical care? I
suspected that medical education itself was the key. In the same way that medical
education emphasizes the fundamentals of the physical exam or preaches the importance
of randomized control trials, it could arm us with the tools to recognize and address
inequities in our system of healthcare. I had hoped my training would incorporate this
skillset and was disheartened to note its absence during each year of medical school.
I could not shake a burgeoning sense of guilt. Was I complicit to a narrow
medical pedagogy that, among other failings, excluded the experiences and needs of
gender, racial, and other social minorities? In light of this exclusion, how could I trust
that my training served the best interest of all patients? The missing illness narratives of
social minorities in medical education had come into sharp focus, and I could not ignore
the harm caused by this pervasive disparity. This thesis has been an opportunity to shed
light on such narratives and define their role and purpose within medical education.
To this end, the following narratives were included. The first narrative, An
Unquiet Mind, is a memoir describing psychologist Kay Jamison’s personal experience
with manic depressive illness. In it, she speaks movingly and eloquently from the
perspective of both patient and clinician. The second narrative, Falling Into The Fire, is a
collection of clinical cases from various stages of psychiatrist Christine Montross’ career.
Montross delves into those patients’ stories that baffled, eluded, and challenged her most.
The third narrative, The Colour of Madness (edited by Dr. Samara Linton and Rianna
Walcott), is an anthology that centers the mental health experiences of Black, Asian, and
ethnic minority individuals. The book represents a concerted effort to address the absence
8
of mental illness narratives authored by individuals who identify as racial minorities. The
final narrative, The Remedy (edited by Zena Sharman), is another anthology; its purpose
is to highlight the illness experiences of queer and trans identifying individuals.
My preoccupation with clinicians’ privileged access to patient narratives and their
obligation to those narratives motivated this thesis. In researching and writing this thesis,
I chose to focus on clinician-authored narratives of mental health written by individuals
who identify as gender or racial minorities. This was a deliberate decision to A) examine
the educational utility of illness narratives written by clinicians and social minorities, and
B) center voices that had been relegated to the margins of medical education. I hoped to
discover if this subset of illness narratives could promote a more inclusive approach to
clinical care, one that drew attention to the connection between healthcare inequities and
poor health outcomes.
9
Introduction
In considering the mental illness experiences outlined in the narratives I have
chosen, I was struck not only by the essential role of trust in the provider-patient
relationship, but also by the layers of complexity intrinsic to building this trust. Imagine
you are speaking with your therapist, aware that the judgements and insights they offer
are based on your words and their perceptions. Though the conversation is guided by
years of training, it is also vulnerable to the biases of both parties. Like any dialogue
between two people, each individual brings perspectives informed by the groups and
value-systems in which they have developed and to which they ascribe.
Both historically and today, social minority groups struggle for fair recognition of
their rights and values. Unequal power and representation of women, for example,
resulted in oppressive systems of government that prioritized the societal advancement of
men. The field of mental health has developed and matured within such systems of
thinking. In fact, “the patriarchal nature of [psychiatry] has been documented by M.
Foucault, T. Szasz, E. Goffman, and T. Scheff.” [Chesler, 2005 #221]
Below, I provide some history on the disease of “hysteria.” The evolution of this
diagnosis is an excellent example of the limitations of mental healthcare historically and
today. Later, in the discussion section of this thesis, I will return again to this disease and
how it exemplifies the arguments of this thesis.
Hysteria is an antiquated catch-all diagnosis for women who exhibited a wide
range of otherwise unexplained physical and emotional symptoms. These
included anxiety, shortness of breath, fainting, insomnia, irritability, loss of appetite for
food or sex, sexually forward conduct, and “troublesome” behavior. I chose this
10
diagnosis for its notoriety in popular culture. Hysteria is a famous example of
psychiatry’s failure to include the narratives of its marginalized patients in constructing a
theory of disease. The consequence of this failure is hundreds of years of embarrassing
conclusions that pass as clinical expertise. The greater consequence is psychiatry’s failure
to serve the needs and promote the well-being of its female patients. The example of
hysteria justifies the necessity of this thesis. It confirms that medical practice must be
informed by a diverse set of illness experiences and narratives. The subsequent goal of
this thesis will be to evaluate how writing and reading the illness narratives of
marginalized individuals can improve clinicians’ structural competence and situated
knowledge – two concepts that I will define and discuss later at length.
The History of Hysteria
The example of hysteria illustrates the demographic homogeneity of the
physicians, psychiatrists, and psychologists who shaped the field of mental health. For
the majority of history, these experts were white cisgender men, highly influenced by
western cultures of health and medicine. The consequences of this lack of diversity
permeated the diagnosis and treatment of mental illness for centuries and has lasting
impact today.
“The two approaches toward mental disorders” in women, the “scientific” and
“magic-demonological” views, become evident in the diagnosis of hysteria. Not only
were women considered biologically vulnerable to mental illness, they were also weak,
easily influenced by the “supernatural,” and somehow “guilty” [Tasca, 2012 #233].
11
Written in 1600 BC, the Egyptian Eber Papyrus is the oldest medical record of
mental illness, with “symptoms of hysteria described as tonic-clonic seizures and the
sense of suffocation and imminent death” [Cosmacini, 1997 #259]. Hysteria was initially
an affliction of women, and the suggested therapeutic intervention at the time depended
on returning a dislocated uterus to its natural position through the polar placement of
acrid and sweet scented substances at the mouth and vagina [Cosmacini, 1997 #259].
Greek physicians and philosophers offered augmentations to the theory of uterine
based illness in 1300 BC. The mythological healer Melampus was credited with founding
the field of psychiatry when he attributed hysteria to “a lack of orgasms and ‘uterine
melancholy,'” [Tasca, 2012 #233] and prescribed the herb hellebore and sexual activity as
the cure. Plato, Aristotle, and Hippocrates all agreed that a lack of sex and child birth
made the uterus prone to retaining toxic hysteria-inducing humours. “Virgins, widows,
single, [and] sterile women” [Tasca, 2012 #233] were particularly vulnerable.
In 100 AD Rome, the Greek physician Soranus penned his treatise on
Gynaecology. In it, he contested the theory of the wandering womb, “the uterus does not
issue forth like a wild animal from the lair, delighted by fragrant odors and fleeing bad
odors” [Fantham, 1995 #260]. However, Soranus still felt hysteria and other women’s
disorders were related to the “toils of procreation,” [Tasca, 2012 #233] and he suggested
abstinence, hot baths, massages, and exercise as the appropriate path to recovery.
For the next several hundred years, both the theory of the wandering womb and
the idea that women were vulnerable to melancholy and hysteria persisted in expert
discourse. The Middle Ages were notable for the publication of Malleus Meleficarum
(The Hammer of Witches), a manual that equated mental illness with sin and blamed
12
diseases without a known cause on the Devil [Kramer, 2009 #261]. Women were
predominantly the witches in question, and until the 1700s, “thousands of innocent
women were put to death on the basis of ‘evidence’ or ‘confessions’ obtained through
torture” [Kramer, 2009 #261]. Even as recently as the 1900s, women were encouraged to
carry smelling salts. Their odor was thought to facilitate recovery when a woman was
“inclined to swoon” [Leff, 1988 #262] by forcing the uterus back to its appropriate
position.
In the late nineteenth century, physicians began to establish a uniform clinical
definition for hysteria. In his review of 430 cases, French physician Paul Briquet defined
hysteria as a syndrome of several physical and neurological symptoms [North, 2015
#263]. Soon after, French neurologist Jean-Martin Charcot, known for his theatrical
demonstrations of hypnotic cures for hysteria, wrote that “hysterical
phenomena…represent neurodegenerative conditions and [should be separated] from their
historical enmeshment in occult and superstitious beliefs” [Bogousslavsky, 2011 #272].
In the 1900s, Pierre Janet’s dissociative theory and Sigmeund Freud’s conversion
theory of hysteria emerged [North, 2015 #263]. Until then, “somatization, conversion,
and dissociation…were closely intertwined under the common label of hysteria for nearly
four millennia” [Bowman, 2006 #271]. In 1952, hysteria and its early theories of etiology
were incorporated into the first edition of the diagnostic and statistical manual of mental
disorders (DSM). And in 1980, the psychoanalytic theories behind hysterical neurosis
were finally discredited and the diagnosis was removed from the DSM. Despite evolving
notions of hysteria, the disorder and its present-day offshoots (dissociation, conversion,
13
and somatic symptom disorder) remain disorders of women in the collective psychiatric
conscious.
The History of the Diagnostic and Statistical Manual of Mental Disorders
To date, the DSM has undergone several revisions; each reflects foundational
shifts in the field of psychiatry. The most notable revolution occurred with the DSM-III,
which centered the concept of evidence-based diagnostic criteria. Rather than relying on
the “psychiatrist’s own possibly idiosyncratic views,” [Shorter, 2015 #273] it required
patients to present with defined symptoms to “qualify” for a diagnosis. The DSM-III
“began a rapprochement between psychiatry and the rest of medicine” [Shorter, 2015
#273] – it valued “diagnoses that [were] clinically well defined, verified with physical
findings and laboratory data, and validated with specific responses to treatment” [Fischer,
2012 #274].
Considering the historical example of hysteria, we can appreciate how “mental
disorders, especially in women, were so often misunderstood and misinterpreted,
generating…pseudo-scientific prejudice” [Tasca, 2012 #233]. While the DSM’s adoption
of the “medical model” signified a turning point for psychiatric diagnosis, the example of
hysteria also helps to illustrate the work that remains. From its inception to its
introduction into the first edition of the DSM, hysteria demonstrates how the language
used to describe mental illness was influenced by historical and cultural power structures.
Though the current DSM attempts to minimize the impact of bias by emphasizing
clinically-validated diagnosis and treatment, it is impossible to separate the document
entirely from the specific social, cultural, and scientific backgrounds of the experts who
14
have historically informed it. Until recently, the majority of these experts have been male
physicians informed largely by western European and North American approaches to
mental health.
The Biopsychosocial Model
The present-day Diagnostic and Statistical Manual of Mental Disorders
emphasizes evidence-based diagnosis. In order to receive a formal diagnosis, patients
must meet the standardized criteria. As a result, the DSM is a valuable point of references
for both patients and clinicians. It can assuage a patient’s feelings of uncertainty or
isolation, and it can also reassure a patient that there is an effective treatment for their
illness. By the same token, it can help a clinician understand a series of disparate
symptoms through a unifying diagnosis. However, despite its strengths, the DSM is still a
document composed by a narrow group of experts that is limited by its vulnerability to
bias. A proposed solution to these limitations is the biopsychosocial model of mental
health. Below I will define this model and discuss why proponents support it.
“Despite individual differences among clinicians, most have been steeped,
professionally and culturally, in patriarchal ideologies” [Chesler, 2005 #221]. One
response is reemergence of the “biopsychosocial model,” a “means to clarify the
[connection between an] individual’s mental health [and their] specific social class”
[Strauss, 2019 #275]. Advocates for equitable mental healthcare look to this model to
“reconstruct our psychological knowledge of [social minorities with] more
inclusive…approaches to psychotherapy” [Comas-Díaz, 1994 #222].
15
Unfortunately, “constructing a meaningful biopsychosocial model for the mental
health field has been extremely elusive…[and] especially daunting” [Strauss, 2019 #275].
Skeptics criticize the approach for being too expansive and detracting from the ability to
understand illness and treatment through unifying categories. However, proponents of the
biopsychosocial model encourage clinicians to develop “structural competence” [Metzl,
2014 #276]. Achieving structural competency requires going “beyond the cultural
specificities of patient care to confront the larger social inequalities of place, race, and
economy” [Schneider, 2012]. The term is meant to introduce into the language of
medicine a concept that links social structures to health outcomes.
Metzl et al. believe structural competence is necessary to intervene on the
“economic, physical, and socio-political forces [that] impact medical decisions.” They
suggest the following strategies to integrate structural competence into the patient
encounter. First, their five-step system requires awareness that “the political economy of
healthcare in the U.S. impacts [health decisions]” [Metzl, 2014 #276]. Second, the
informed clinician must look beyond biomedicine, which is adept at describing the
“biological impacts of lived environments” [Metzl, 2014 #276]. Instead, clinicians must
engage with fields like medical anthropology, sociology, and urban planning. Such
pedagogies are decades ahead of biomedicine in their analysis of the environmental
determinants of illness and health disparity. Third, clinicians must eschew the term
cultural competence in favor of structural competence. Evidence suggests that the former
may obfuscate “the deeper ways in which complex structures produce inequalities”
[Metzl, 2014 #276]. In the last two steps, physicians are encouraged to practice structural
intervention and structural humility.
16
The Utility of Clinician-Authored Narratives
Here I will return to the concept that diverse illness narratives can improve
clinical care. In particular, clinician-authored narratives can serve to promote the
biopsychosocial model of mental health by developing the skills of structural competence
and situated knowledge. Situated knowledge is the idea that all forms of knowledge
reflect the particular conditions in which they are produced – a concept I will elaborate
on later in this thesis.
Imagine, once more, a woman speaking with her therapist. Her story and behavior
are being evaluated; her therapist records data about her appearance, her attitude, her
affect. The patient, the provider, both, or neither may enter the encounter aware of the
history that shapes their conversation or the social contexts that separate their lived
experiences. Regardless of their awareness, these certainly impact their relationship, their
rapport, and the work they do related to the patient’s mental healthcare.
Through the narrative form, clinicians can create the time and space to reflect on
the social determinants of health that complicate and inform their clinical encounters.
They can return to these encounters and think deeply about their own and their patients’
lived experiences, and ultimately how these have influenced their evaluations.
And suppose the clinician is aware, or learns to be aware, of the complicated
factors that inform their clinical evaluation. How do they grapple with them? How do
they harness them to improve their patient’s experience and care? In this thesis, I will
argue that the clinician-authored narrative is not only a tool that facilitates reflection on
the social determinants of health, but it is also a way for clinicians to develop the
17
knowledge and competencies necessary to understand and intervene on these
determinants of health.
18
Methods
The Search for Primary Sources
When I first began to think about this thesis, my intention was to focus on the
narrative writing of mental health clinicians who identified as women. I was aiming to
center the voices of women, and I was curious about how the lived experience of women
was represented by narrative medicine. I also chose to focus on clinicians rather than
patients. I made this decision because I hoped to draw conclusions about the utility of
engaging with narratives as a clinician-reader or clinician-author. Specifically, I intended
to identify concrete ways in which narratives improve the clinical education and practice
of providers from all backgrounds. In order to accomplish these goals, I also felt it was
important to have a narrow clinical scope. So, I chose to focus on mental health.
Multiple resources, including the Yale School of Medicine librarians, the Stanley
Jackson Collection of ninety-seven mental illness narratives, and the NYU LitMed
Database, were used to locate primary sources. I soon noticed that I was generating a list
of white cisgender women authors. I wondered if the lack of authors from racial minority
or gender non-conforming backgrounds was due to a flaw in my review of the literature. I
set out to fill this gap by querying databases and library associations that would be most
likely to curate a collection of medical narratives written by authors with these
marginalized backgrounds. These included the American Indian Library Association and
the Black Caucus of the American Library Association. I also enlisted the help of
scholars in the History of Science and Medicine program. Unfortunately, these strategies
proved unsuccessful. It became evident that book length narratives written by individuals
19
who were mental health clinicians with racial minority or gender non-conforming
backgrounds were not easy to locate. In fact, I did not find a single narrative that fit these
criteria.
I understood that it was impossible to include authors from an exhaustive range of
lived experiences. For example, I recognize that this thesis does not discuss the ways in
which religion, ethnicity, class, or other marginalized social identities can inform medical
narratives. However, the exclusion of women authors from racial and gender minority
backgrounds struck me as particularly self-defeating. Race and gender are two types of
marginalized identity that have been extensively associated with poor health outcomes. I
was attempting to write about the importance of centering and promoting women’s voices
in the narrative medicine space, and I could not do so by discussing a series of narratives
written only by white cisgender individuals. I decided to relax my criteria and hoped this
would uncover authors I had overlooked. Turning to Twitter, I began looking for shorter
narrative forms that still fit my author criteria. There, I discovered The Colour of
Madness and The Remedy. Both books were a collection of anthologies curated to include
narrative essays written by authors from marginalized backgrounds.
Ultimately, following a thorough literature review, four narratives were selected
as primary sources for this thesis. The clinician-authors of these narratives were
interviewed about their perspectives on and motivations for narrative writing, and the
primary sources and interviews were analyzed for common themes. From these themes
and the literature, arguments were constructed on the utility of clinician-authored
narratives.
20
The Process of Interviewing Authors
I had the opportunity to interview the authors of the narratives selected for this
thesis. The purpose of these interviews was to learn the authors’ perspectives on the
biopsychosocial model of healthcare, structural competence, situated knowledge, and
gender and race in mental illness. Over the course of the year, I located each author’s
contact information or reached out through a mentor or mutual acquaintance. Dr.
Reisman introduced me to Dr. Montross, and Dr. Mazure introduced me to Dr. Jamison. I
was able to reach Dr. Cassie Addai, Dr. Kamal Kainth, and Dr. Sand Chang via email to
set up interviews. Each of the authors were scheduled for an interview, and the interviews
were conducted over the phone. I selected quotes from each author’s written narratives in
order to prompt specific questions about the categories listed above. I then transcribed the
interviews as I conducted them to create an accurate and quotable document of the
authors’ answers. Interviews are included in the appendix.
The Qualitative Analysis of Primary Sources and Author Interviews
This evaluation of clinician-authored narratives used qualitative research
methods. Specifically, primary sources and author interviews were appraised for common
themes. Themes are defined as “recurrent unifying concepts or statements about the
subject of inquiry” (Boyatzis 1998) or “fundamental concepts that characterize specific
experiences of individual participants by the more general insights that are apparent from
the whole of the data” (Ryan and Bernard 2003).
Themes that emerged from analysis of primary sources and author interviews
included, the biomedical diagnosis of mental illness, developing structural competence in
21
clinical care, building situated knowledge through writing, and the role of gender and
race in mental illness. These themes were developed and presented at the biannual
research in progress meetings, and the slides are included in the appendix. Each of these
themes will be defined in later sections, and they will serve as the basis for the discussion
that follows in this thesis.
The specific qualitative method used for this project can be best described by the
concept of phenomenological research. This refers to research that is interested in
ascertaining what an experience – for example, the writing and reading of medical
narratives – means to the subject, in this case the clinician. As the researcher, I was
interested in the lived experience of mental health clinicians and how this experience was
represented in their narratives. Ultimately, I used the phenomenological approach what
purpose these narratives served for clinician-writers and clinician-readers in their
practice.
22
Results
The Comprehensive List of Potential Primary Sources
23
Discussion
The Biomedical Diagnosis of Mental Illness
In this section, I will discuss the role of the biomedical diagnosis in the patient’s
and the provider’s understanding of mental illness, outlining the pros and cons of
receiving a diagnosis. I will link this to the role of writing, describing how providers
record narratives about mental illness to complement and expand the medical field’s
understanding of the patient experience beyond what is gained from the diagnosis alone.
Furthermore, I will argue that narrative writing not only expands this understanding, but
it also illuminates the gaps in it. This is particularly true of narrative writing authored by
providers who hold marginalized identities themselves, as they are more likely to put
words to their patients’ experiences of oppression.
For many patients, receiving a diagnosis can be helpful. “Although research has
found that individuals respond to receiving a psychiatric diagnosis in diverse ways, one
common finding is the expression of relief and validation” [Proudfoot, 2009 #283]. A
biomedical name for a patient’s illness can help them feel their experience is legitimate
rather than unusual. It can also offer them hope that their illness, because it has been
identified, could also be treated. Furthermore, “in orienting around the problems of the
body (such as genetics or neurochemistry), a biomedical approach can” help the patient
and the public accept the legitimacy of illness without “impos[ing] judgments of
weakness, laziness, belligerence, or a simple failure to cope” [Lafrance, 2013 #368].
Ultimately, it can “transform individual distress to a shared experience, one that is
understood as both credible and treatable” [Lafrance, 2013 #368].
24
However, not all individuals feel so positively about receiving a formal diagnosis. In fact,
there are several critiques of diagnostic categorization in mental illness. I will outline a
few of these critiques and subsequently argue that the narrative form serves to inject the
historical and contextual nuance that is sometimes missing from formal diagnosis.
Despite its recent historical shift away from psychoanalysis and toward
biomedical evidence-based diagnosis, the Diagnostic and Statistical Manual of Mental
Disorders is neither a “neutral nor value-free document” [Hare-Mustin, 1997 #369]. Like
any document, it is prone to the “social, moral, and religious prejudices” of those who
write it. Not only are critics of the DSM skeptical of its neutrality and inclusivity, but
they are also aware of the “strong market forces [that] operate to ‘incentivize’ the use of
diagnostic labels” [Jensen, 1997 #370] and the pharmaceutical benefits to an ordered
system of classification. One of the strongest critiques of the DSM is that it remains
“acontextual and mute about the conditions in people’s lives that might understandably
and predictably give rise to symptomatic behavior” [Duffy, 2002 #371]. Its “focus on the
individual in isolation [is] an especially pernicious problem for those living in oppressive
circumstances” [Lafrance, 2013 #368].
Therefore, diagnosis in mental healthcare is fraught with complexity and the
preference for or against receiving one remains highly personal. Not only should
providers be aware of this complexity, but they should also recognize that patients rely on
their expertise and nuanced understanding of the DSM to guide them through their care.
One way to build this awareness and appreciation for the strengths and limitations of the
DSM is through the narrative form.
