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Introduction 3
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knowledge of his newly announced disease, a film in which the main
character watches her life wind down after learning she has an earlyonset dementia.
Diagnosis is part of many stories in ways that are immediately recognizable yet sometimes hidden. Diagnosis is frequently the key to a
story, and to a character’s trajectory or identity, but it is often woven
into the tapestry so seamlessly that the reader barely notices it. It is
structurally embedded in how we tell stories, yet not visible. It needs
calling out. That this moment is so common, that we take it in stride,
without even seeing it, is the important issue that this book confronts.
Diagnosis is as pervasive in popular media as it is in medicine, part of
a particular kind of storytelling that shapes how we meet these difficult
experiences of, and conversations about, disease.
Throughout this book, and via numerous media, I will reveal the stories triggered by diagnosis and consider the way they shape our social,
and individual, thinking about a moment like the one that opened this
Introduction. I will expose the narrative nature of diagnosis and reveal
how its discursive construction as truth instils it with various forms of
power: transformative, authoritative, and administrative.
Every serious diagnosis sets loose a multitude of stories. From the
stories conceived of, told, and retold by the patient quietly to herself before she goes to the doctor, to the story the doctor carefully prepares and
rehearses before delivering it to the patient, and to the many stories that
will be told afterwards by the patient, the doctor, and their respective
entourages, diagnosis is at their core. The diagnostic moment serves as
a poignant stimulus for these stories and many more in our lives. Diag-
nosis: Truths and Tales explores stories about diagnosis and ponders the
impact they have on how we experience health and disease.
The stories associated with diagnosis, and particularly about the moment a diagnosis is offered to a patient, are interesting because they are
so prevalent, so influential, yet at the same time, so invisible. They are
told by doctors, sick people, well people, novelists, film-makers, and
advertisers. They appear in books, on film, on the radio, online, and,
well … almost everywhere!
I wrote this book both to render visible and to defuse these influential
stories. The rendering visible, the revelation, is not just for the purpose
of detailing their frequency and pointing to their occurrences. More importantly, it is to demonstrate their influence. As I will expose in the
chapters that follow, and as I described above, they are powerful social tools, these stories. They shape how we think about health, illness,
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and disease. They structure authority in our society and determine who
gets access to resources. They force us to look at our identity and our
futures in ways we might otherwise take for granted.
There are many ways to discuss and explain these stories, but my discussion will be framed by intersecting and overlapping perspectives. I
cannot restrict myself to a historical analysis or a sociological one. But
neither will I position this book in medical humanities or in literary
criticism. Placing the analysis in one or in another silo would do little to
expand our thinking about the role these stories play.
People in many scholarly disciplines talk about narrative, ranging
from literary theorists to philosophers, psychologists, sociologists, and
anthropologists. Each discipline has its own way of considering stories. The literary scholar might focus on the structure of narrative, its
themes, conventions, and symbols; while the sociologist will be more
concerned with the structure or function of a narrative creation.
I prefer to think of the narratives of diagnosis as a version of the
“boundary object” as described by Star and Griesemer.5 These “objects”
are positioned at the intersection of what these authors call “different
worlds” with different aims and theoretic positions, but with simultaneously shared goals. To explain more simply, these objects are positioned
in the middle of a kind of Venn diagram. They belong completely to
each set in which they are positioned, different though they may be,
and yet at the same time, they belong to all.
The stories of diagnosis are a special kind of object with “multiple
memberships.”6 They are examples of how different worlds can share
the “same territory.”7 The diagnosis narrative is, in a way, a theoretical
boundary object that the critical theorist, literary critic, medical humanity scholar, sociologist, anthropologist, clinician, and patient (only to
name a few) can all claim.
To understand how to pull all of these different locations together, or
at least see how they interface, Bruno Latour’s suggestion about what
it is to be a critical scholar is useful here. It is “not the one who debunks, but the one who assembles. The critic is not the one who lifts the
rugs from under the feet of the naive believers, but the one who offers
8
the participants arenas in which to gather.”
There are many arenas in
which we can gather to discuss these stories. That is, in fact, the point,
and one aspect of the power of the diagnosis narrative. While one camp
may see the point of studying the diagnosis narrative as a way of humanizing medicine, of serving its practice,
9
another may see it as a way
of denouncing medicine and its reductive stances.10 These narratives
Introduction 5
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may be cast as pressure valves with therapeutic potential,11 as vehicles
of political activism,12 as “guidebooks to the medical experience,”13
and so on. Diagnosis: Truths and Tales will assemble the examples and
the arenas and propose a way through: one that will alight upon one
frame and then another to find alternative ways of narrating a serious
diagnosis.
We might commence this reflection on diagnostic stories by pondering
classification; diagnosis is a classification tool, and it is via the establishment of disease categories that diagnostic narratives can emerge and
where influence starts. Diagnoses are not fixed and static; they are constantly changing in line with advances in technology and social priorities. We should reread the words of Thomas Arnold given to the Rugby
Literary and Scientific Society.14 Writing in the great age of classification
when naturalists were developing taxonomies to describe the world,
its occupants, its fauna and flora, he observed: “We are not to suppose
that there are only a certain number of divisions in any subject, and that
unless we follow these, we shall divide it wrongly and unsuccessfully:
on the contrary every subject is as it were all joints, it will divide wherever we choose to strike it, and therefore according to our particular
object at different times we shall see fit to divide it very differently.”15
While we might take exception to some other of Arnold’s positions on
education and on the ways of the world, this particular reflection on
how classification takes place is nonetheless illuminating. In any case,
it certainly reflects a deeply held belief in categorization as a practical
and conscious action. The fever tree depicted in figure I.1 is an example
of how categories are used to shape thinking. Centuries prior, Socrates
had proclaimed that he was a “lover of these processes of division and
bringing together, as aids to speech and thought; and if I think any
other man is able to see things that can naturally be collected into one
and divided into many, him I follow after and ‘walk in his footsteps as
if he were a god.’”
16
In diagnosis, medicine (usually doctors) makes the divisions, and
this is already a demonstration of how diagnostic narratives convey
power, the godliness to which Socrates refers. Diagnosis is, in itself, a
process of division. The etymology of the word diagnosis is from the
Greek. It means to tease out differences, to separate, or to recognize
divisions in a subject: from διά (diá, “apart”) + γιγνώσκειν (gigno¯´skein, “to
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I.1 Diagnosis as clear-cut categories: A Scientific Classification of
Fevers. Fever tree. [Illustration from a work by Prof. Torti of Modena
University, Therapeutice specialis ad febres periodicas perniciosas, 1712.
Credit: Wellcome Collection]
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learn”). It was first mentioned in the medical context by Thomas Willis
who defined it in his tables as “Dilucidation, or Knowledg” in 1681.17
By 1701, the Rev George William Lemon referred to “diagnostics” [qui
est dignoscendi, peritus: subtle discerner]: “A knowledge or judgement of
the apparent signs of a distemper, or a skill by which the present condition of a distemper is perceived, and this is three-fold, viz. 1. A right
judgment of the part affected. 2. Of the disease itself. 3. Of its case.”18
Today, we speak of diagnosis both as the category and as the process by
which an individual’s ailments are categorized.
19
As the boundaries are determined, their repeated use then naturalizes them so that we fail to recognize other ways one might choose to
strike. The boundaries that circumscribe the diagnosis are drawn with
indelible ink, cutting short the debate about where else the lines could
be drawn, cementing the disease as The Way Things Are, although, in
reality, it is only the way we say (think) things are, in a particular context or in a particular point in time. Once the classification system exists, we stop questioning how it got there, since we use the categories
to make sense of our world, and as we naturalize these classifications,
we fail to consider an important principle. No study of the word natural
should fail to touch on that other great ideological word, real.
20
For every diagnosis, in addition to whatever natural or biological
phenomenon is at its base, there is a political, media, biophysical, and
metaphorical frame as well. Framing effects are the ways in which “we
generally recognize, define, name and categorize disease states and attribute them to a cause or set of causes.”21 We can see this framing in
the presence, for example, of obesity, which on the surface, seems like a
straightforward condition, immune to social frames. Yet it has powerful
social frames. Plumpness (even extreme) has been, and still is, variably
seen as desirable or pathological according to era or culture. This is a
diagnosis that has changed its means of assessment over time (from
visual assessment of excess adiposity to height and weight scales).
Even within standard means of assessment (body mass index or BMI),
the cut-off levels to define obesity have changed regularly over time.
Obesity is a proxy measure for ill-health – a predictor of poor health
outcomes – as opposed to a condition in and of itself. BMI is a population measure, based in epidemiology, that is used on individuals with
no regard for ethnicity. All these factors demonstrate how obesity is a
fluid, changing medical description of something that is not quite the
same from era to era, from person to person, or from country to country, despite the material reality of heavy bodies.
22
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Framing is also a feature of narrative: stories cannot exist without
form. In this book, which deals with the diagnosis as a trigger for narrative, revealing its frames is as important as the frames it will create in
the narratives it elicits.
The frame in which a disease is named is usually set as a moment
of drama, be it in the clinic or a television show. That moment of tension, when the lab results are assembled, already inspected to see how
they explain (or don’t!) the patient’s signs and symptoms, is powerful.
The doctor takes a deep breath and gets ready to deliver the “judgment.”23 This moment and its message will be the starting point for stories. There will be the story that the doctor will deliver, which will link
all the facts of the disease and reassemble them in a way that makes a
particular kind of sense. There will be the story that the patient will tell
about what this diagnosis means in her life and those of people around
her. There is also the story that is inscribed in the medical records, or the
correspondence between clinicians, which will be read and reread by
future health professionals, and sometimes by the patient herself, who
may be surprised by an alternative narrative.
24
The instant the diagnosis is delivered, storytelling has commenced,
and with it, a particular plot line, with its specific kind of punch, is
inscribed. There may be a story of relief, in which previously disorganized pieces suddenly click together like a completed jigsaw to show a
picture. Or the diagnosis may generate a story of disarray, when a life
planned falls apart, the future dissolves, and the sense of self shifts.
Hearing a life-threatening diagnosis, or even having one definitively
ruled out, is a crisis moment in the life of the individual.
25
Of course, that “instant” of diagnosis might also be drawn out and
not quite so discrete. Another story preceded it (the one that made the
person think they needed to see the doctor). There were hints and clues
that could mean different things depending on how they were assem-
26
A lump on the shin could be part of the story about a clumsy
bled.
girl, always running in to the dishwasher door, left open by her careless
brother, or could alternatively be connected to the lymph nodes, the
fatigue, and the fever. When does the story of diagnosis start?
Regardless of whether this moment is succinct or drawn out, it is
not surprising that it should trigger narrative. Narrative is the way in
which a series of events are communicated to a reader, a listener, or
a viewer; just as diagnosis is the way in which a set of discrete and
potentially chaotic symptoms are explained to a patient. In narrative,
events tend to be linked by causality: one thing happened, and as a
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result another thing happened, and another and another. But what is
important here is that in narrative, events are represented. They are as-
sembled and made sense of, then retold in a way that re-presents a particular case of the occurrence, using all the skills of storytelling and
narrativity (the performance of the story). In diagnosis, the same thing
happens. The individual looks backwards and forwards to answer the
questions, Why me? And why now? The old rugby injury is brought to
the fore to explain the gouty knee, the smoky workplace to explain the
obstructive pulmonary disease. By developing a narrative explanation
for the unexpected or unwelcome diagnosis, the individual wrests back
a modicum of control of the situation.
27
An effective story is more than a list of happenings. Narratives
wrangle with human experience and do much more than simply string
events together chronologically.28 To become a narrative, events must
be experienced through a subject. Similarly, a diagnostic taxonomy sans
patients serves no purpose. The diagnostic narrative begins precisely
because the diagnostic event is experienced in a deeply personal way.
The power of diagnosis to trigger narrative is linked with the power
that diagnosis affords medicine in general and the doctor in particular. The pursuit of diagnosis brings the patient to the world of medicine. The ability to diagnose confirms the physician’s authority. Indeed,
diagnosis is so pivotal to Western medical practice that it is hard to
imagine medical care without it. The diagnostic narrative provides an
explanation for an ailment, an idea of what the treatment options might
(or might not) be, a prognosis, and much more. It assigns responsibility
for illness, within medicine and outside. It determines which specialty
or sub-specialty can take care of which disorders. It also assigns causation, pointing the finger variably, at the patient for example, for what
she ought to have done, or to the gene, the effects of which may be out
of the patient’s control.
Seeking a diagnosis, then, is the impetus for the sick person to consult the doctor and cements authority at the same time as it reinforces
patience and submission. Its special features glue together particular
kinds of links and explanations. For example, a diagnosis is a kind of
shorthand for multiple signs and symptoms, capturing long case descriptions in just a word or three. The simple modified noun bacterial
pneumonia evokes chest pain, shortness of breath, fever, crackly breath
sounds, and a milky X-ray. It leads to antibiotic treatment, rest, and
sick leave. Yet it doesn’t reveal the curious (and maybe unrelated) neck
pain that was the patient’s main concern and incited her to consult, and
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that was the fulcrum to her presenting story. So while a diagnosis summarizes, it also shortens the story, bringing particular aspects of suffering to the fore and obfuscating or leaving others in the shadow. What
doesn’t fit into the plotline recedes as the diagnosis becomes the dominant account of the case and of the patient. In the hospital, it’s common
to hear the patient reduced to a narrative metonymy: the myocardial
infarct in Room 25, the pneumonia in Ward 3 …
The careful choice of the diagnosis by the clinician is part of a recognition of the stories that will be generated from this label or that one.
For example, the choice of codes, or the manner in which an individual’s condition is identified in medical records, say different things about
the person, his or her character, and the person’s future. Where private
insurance dominates medical funding, a diagnosis could be chosen
with the individual’s future well-being in mind. To say that a patient
suffers from adjustment disorder (signifying a short-term psychological
response to an outside event) explains that she is having a hard time
in an otherwise “normal” psyche. In contrast, a “major depressive disorder, recurrent episode” describes a constitutional tendency towards
depression, a life-long way of being. Whether the recognition of the
stories triggered by the choice of diagnosis is to ensure better insurance
coverage or optimism in the patient is immaterial.29 The point is that
the label influences how we see the character, the plot, and the possibilities for resolution.
Diagnoses are sometimes manipulated to enable the much-needed
resolution to a troubled story. The doctor might avoid, for example,
particular diagnostic explanations in relation to cause of death when
suicide takes place. This may enable the deceased a burial in hallowed
30
ground and protect the family from the associated stigma.
Or the diagnosis of migraine might be deflected in favour of “tension-type headache” in the records of a student hoping one day to go to flight school,
as the US Federal Aviation Authority may consider people with migraines unfit to be pilots. Or the diagnosis might be imposed according
to a particular set of dominant values that tell tales about what it is to be
white or black, wealthy or poor, and how anxieties about race or status
impose particular stories (expectations) of disease.
31
Stories, therefore, shape diagnostic work but not only in relation to
the diagnostic category. They shape understandings of the “sick role,”
or the way in which having a diagnosis – being “sick” – shapes a different social role for the individual thus designated.
32
The fact of dis-
ease gives a kind of permission for the person to stop fulfilling other
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normative social expectations like going to work or even getting out
of bed. On the other hand, the sick role requires the adoption of new
social behaviours. The patient must be compliant, following medical
orders and investing effort in getting better. The social, cultural, and
phenomenological position of the diagnosed individual will influence
these expectations and the degree to which he or she fulfils them.
This fact is not lost on anyone who has read Anne Fadiman’s The
Spirit Catches You and You Fall Down.33 In the riveting pages of her book
about a Hmong girl and her family’s encounter with American medicine, we learn why their respective views are so apparently irreconcilable. Hmong understandings of epilepsy were so far removed from
those of the California medical team looking after this child, that the
parents and the medical team could find no common ground upon
which to make sense of the young girl’s seizures. Medicine couldn’t
be an answer in a culture that saw epilepsy as a spiritual, rather than
a pathophysiological, condition. No translation could make up for the
cultural divide, because of the absence of a shared frame of reference.
Ultimately, we shouldn’t be surprised. Any social scientist can testify to the importance of understanding cultural worlds to understand
(or promote) different outcomes. Almost any disease with unequal distribution or outcomes across genders, cultures, or ethnicities carries a
range of narratives and explanations to account for these differences.
Capturing these accounts of contest, inequity, and suffering is paramount to understanding and rectifying the differences.34 Understanding how people experience illness and death is fundamental to enabling
better experiences of health and life, as well as of disease. And finally,
listening to the stories that diagnosis triggers should make diagnosis
easier to perform, as well as easier to bear.
Many doctors have promoted the importance of narrative in medical encounters and in the improvement of medical education. One
nineteenth-century physician opined: “There are many times when
it is incumbent on the wise physician to prescribe, not a posset or a
35
purgative, but an essay or a poem.”
Similarly, Silas Weir Mitchell, a
prominent nineteenth-century American neurologist and also a writer
of fiction, admonished graduating medical students that “you deal not
with the bodies of men alone; woe to them and to you if this be your
definition of medicine. Men’s souls, men’s lives, their thoughts, passions and temptations, their secrets and crimes, come all within the
range of your experience.” As a remedy, he advised that “the best literature of prose and verse is what I ask you to make a part of your
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mental outfit for that profession in which no accomplishment can possibly be wasted.”36 He was also, ironically, the same physician who
ordered Charlotte Perkins Gilman, author of The Yellow Wallpaper to
stop writing.37 His belief in enforced idleness as a cure for neurasthenia
kept Gilman away from her “habit of story-making,” lest it “lead to all
manner of excited fancies.”
38
Today, “narrative medicine” refers to an approach to medical education and practice that pays particular interest to stories as a way of
understanding what ails patients and achieving better outcomes for
them. It is, according to Rita Charon, “a clinical practice informed by
the theory and practice of reading, writing, telling and receiving of stories.”39 Narrative medicine brings in another way of looking at patient
accounts which otherwise driven by data, evidence, science, disease,
and sharp-edged practices which seem to leave the patients forgotten
in their wake. Charon describes diagnosis, as I will throughout this
book, as a means for emplotment,40 a way of making sense of a disorganized illness.
Patients, too, have written about the practice of doctors and the
experience of being forgotten in the wake. Performing diagnosis transfers power to the diagnostician. Musing on the tension created by this
power Anatole Broyard wrote, “I just wish that [my doctor] would brood
on my situation for perhaps five minutes … as he goes through my flesh,
to get at my illness, for each man is ill in his own way … just as he
orders blood tests and bone scans … I’d like my doctor to scan me to
grope for my spirit as well as my prostate.”41 Broyard feels himself transformed at the diagnostic moment from patient into diagnosis, a transformation he resists. “I want to be a good story for him,” he laments.
This is a point that the linguist Fleischmann reflected upon when she
described how, in English, we integrate diagnosis into the self, becoming, in some cases, the disease (I am diabetic/depressed/schizophrenic).
In other cases, we only carry the disease (I have pneumonia/lymphoma/
cancer).
Broyard doesn’t think for a moment that the diagnostician would
be anyone other than a doctor, and this is not surprising. The medical jurisdiction over diagnosis is a long-standing source of prestige for
doctors. While a number of other professions are gaining some diagnostic privileges (the nurse practitioner, the clinical psychologist, and
the physiotherapist also have specific diagnostic realms), their access to
diagnostic authority is limited and controlled by medical associations.
I will predominantly refer to the traditional doctor-patient dyad in the
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