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Methods for Understanding the Diagnostic Moment 153
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they endure and to frame the illness so as to escape dominion by it.”51
The healing process begins with the narrative, she writes, “when patients tell of symptoms or even fears of illness – first to themselves, then
to loved ones, and finally to health professionals.”52 Charon contextualizes these views in relation to narrative medicine, an approach to medical education and practice that explores the importance of listening to,
and telling stories, as a way to promote effective health outcomes. Her
words above highlight how understanding narratives contribute to the
practice of medicine: being able to identify the context of illness, beliefs
about causality, characters, and emotions contribute to understanding
what a patient is experiencing. It aids the doctors to recognize both
their patients’ and their own singularity in among the generalizing
grasp of the diagnosis, the algorithm, and the protocol: “Using narrative knowledge enables a person [to] understand the plight of another
by participating in his or her story with complex skills of imagination,
interpretation, and recognition,” she underlines.
53
The narratives discussed above go beyond the individual stories
of the diagnosed women to offer techniques for understanding them.
While based in singularity, each one of these authors looked for the
general and did so via their disciplinary expertise.
As I started to pull together this book, and considered what it should
include, it seemed to me that the most important thing it could offer
my readers would be a different way of looking at a phenomenon for
which most of us already have a conceptual model. At the start of this
chapter, I described how stories, too, could be told differently highlighting the helpful, rather than the destructive, powers of diagnosis. The
problem with the models we use, the stories we tell, is that we rarely
have any distance from, or a critical sense of, how we’ve arrived upon
them or what other ways we might have for looking at or narrating a
problem. We resort easily to tropes and prominent templates
I am, myself, a sociologist and tend to look at problems through a
sociological lens, which is concerned with structures and values and
where power resides in any particular conflict or enigma. But at the
same time, I work as a health professional, and I use a very different
perspective to consider problems when I arrive on the scene of an emergency in my community (I work as a rural first responder for the ambulance service). While I rely on clinical reasoning when I decide what
steps to take with my patient, having access to sociological tools may be
far more powerful as I debrief with the emergency rescue team after the
event. Why did things work (or not!) as we expected?
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Sociologists Glaser and Strauss commented on the potential of having
different disciplinary points of view for making sense of phenomena.
Of course, they considered sociology a helpful alternative to clinicians:
“The most useful sociological accounts are precisely those which insiders recognize as sufficiently inside to be true but not so ‘inside’ that they
reveal only what is already known … The sociologist’s obligation is to
report honestly but according to his own lights,” they wrote.54 My reading of this is that the account of the sociologist is one which will resonate
with the clinician; the clinician herself could not have constructed this
particular account without the sociologist’s (different) ways of analysing the phenomenon.
What this says is that the sociologist is in a privileged position, with
access to a different set of tools and theoretical and epistemological
foundations for examining the challenges faced by Western medicine,
its practitioners, and those who seek its support. The sociology of diagnosis, understood in the terms of Glaser and Strauss, provides a critical
perspective of the practice of medicine, viewing its limitations and constraints from outside of the values which engender it, and acknowledging the power dynamics at play in the practice of medicine.
But sociology alone is not enough. Or perhaps I should say, classic
sociology is not enough. I have previously written about what I call
multi-contextual critical diagnostic studies.55 My thinking about situating sociology in a much broader context comes from the writings of
sociologist Eviatar Zerubavel, whom I mentioned in chapter 4. His approach is to study social problems across context, media, and era to
uncover what he refers to as enduring social “patterns.”56 Zerubavel’s
social pattern analysis is an approach inspired by Simmel, which seeks
to understand a social structure or phenomenon by studying it as
broadly as possible, across as many contexts as possible. Social pattern
analysis is indifferent to “singularity,” or to what appear unique and
discrete instantiations of particular behaviours. Rather, in social pattern
analysis, one is “purposely oblivious to the idiosyncratic features of the
communities, events or situations that they study, looking for general
57
patterns that transcend their specific instantiations.”
The comparisons
that emerge from social pattern analysis are designed to “highlight the
formal commonality rather than the cultural, historical or situational
singularity of the various specific manifestations of that pattern.”
58
The diagnostic process is remarkably well suited to the trans-everything approach Zerubavel describes. In fact, ideas about diagnosis only
make sense within a wider structure of thought. When the sociologist
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considers the spectrum of ways in which diagnosis is illustrated, it is
clear that situating the study of diagnosis in a wide context opens up
the subject to the multiple viewing perspectives from which diagnosis
is identified, promoted, enacted and experienced. To overlook creative
interpretation of diagnosis (film, theatre, poetry, fiction), for example,
is to shut off potential symbolic meanings poignantly understood by
viewers/readers and potentially more powerful in understanding the
social dynamics of the diagnostic moment as is a qualitative observational study. Similarly, the use of cultural and historical data provides
rich sources in the pursuit of commonality, “compar[ing] phenomena
that may be radically different in concrete content yet essentially similar in structural arrangement.”59 This follows Douglas who wrote: “the
right basis for comparison is to insist on the unity of human experience
and at the same time to insist on its variety and the differences which
make comparison worthwhile.”
60
So, as I assembled these “intellectual documentaries,” I was curious
about what these linguistic, philosophical, literary, and also sociological
interpretations would offer. Convinced of the important contribution
such different approaches would make to my readers, I was also aware
of my own disciplinary anchors. Would an Epicurean or a semantic
analysis of the diagnosis resonate with me, as Glaser and Strauss maintained a sociological analysis should with a similar outsider?
These essays strike many chords. They were familiar yet novel: perspectives I couldn’t might not have easily uncovered from my own disciplinary vantage point. I am reminded, for example, of how one of my
sisters refers to her physical ailments. Instead of explaining that her
arthritic knee is sore, she’ll more likely explain that “her knee is not
happy” or that “her knee is bothering her” or even that “her knee is
doing what it does.” By using this syntactical construction, I can now
see, she is likely distancing herself, perhaps from this thing that she has
not found a way to overcome. She is making her arthritis external to
herself and to her volition. At the same time, I can also see the potential
risks in linguistically constructing diagnostic description in one way
as opposed to another, because of the very same or similar semantic
consequences.
I can also see how so many diseases are linguistically constructed in
general terms before they unleash any personal impact. Have you noticed that people who die from cancer are often referred to as victims, as
if cancer had some particular agency and intent to attack? We may fall
victim to the cold, fire, heat (or to violence!), but with the exception of
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cancer, we aren’t usually referred to as falling victim to many other diseases. Even if we are undiagnosed, and are not ill or diseased, that we
would think of cancer as something lurking in the background ready
to victimize us pre-shapes the cancer we or our associates may one day
experience.
There is no doubt that these authors, in writing the stories of their
own diagnoses, accomplished the same thing as they might have were
they writing a generic illness narrative. In each of these essays, there
is a clear personal engagement with illness and, more importantly (for
the purposes of this book), with a diagnosis. But there is also an attempt
to achieve something generic in their personal narrative. By exploring
their phenomenological experience of diagnosis with their disciplinary
overlays, they provide different ways of explaining, studying, and improving the diagnostic process and its announcement.
They are not alone in writing such accounts. Art Frank, to whom I
referred to previously in this book (and this chapter) has been writing about the illness experience from a sociological and humanistic
approach for over 20 years. But so too have Ann Oakley,61 Elizabeth
Ettorre,62 PJ Caplan,63 or even poet Raymond Carver,64 whose “What
the Doctor Said” distils powerfully the impact of a lung cancer diagnosis, by describing how he thanked the doctor for his diagnosis, “habit
being so strong.”
To understand any subject critically requires a multifaceted and multiepistemic approach to the subject. By multi-epistemic I mean coming from
different sources of knowledge. There is not one absolute way to understand the “truth” of a subject. That I put the word truth in emphatic quotation marks is precisely to underline that truth is not a fixed entity; there
are many ways of knowing truth. Readers of this book about stories are
likely easy to convince that, for example, statistics and numbers convey
only part of the truth of diagnosis. But, even if they are sociologists, like
I, they might not have considered the many other ways of thinking sociologically about diagnosis. These authors provide us with a range of
approaches that reveal more than we could reveal on our own, with the
tools we normally hold in our hands. They expand our thinking about
how diagnosis and diagnoses operate and frame our sense of the world,
of health, and of illness. To have a true critical understanding of diagnosis, we must look at various disciplinary locations to explore the full
impact of diagnosis as an object of study.
CHAPTER EIGHT
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What’s There to Tell?
Diagnosis-as-Mystery
I started this book claiming that diagnostic stories were prevalent, influential, and invisible. I proposed to reveal their presence and describe
the way in which they exerted various forms of power to reassemble
these narratives in ways that might dilute their dominant impact. As I
come to the end of this book, I propose one last diagnostic narrative and
highlight its alternative potential.
One rainy evening, I happened to catch a glimpse of The Avengers.
This 2012 production by Joss Whedon is a live-action version of the
Marvel comic strip by the same name, first produced in the early 1960s.
The story is about a team of superheroes, ever vigilant to save the world
and its people from external forces. Hulk, Captain America, Iron Man,
Thor, and others fight “the foes no single superhero can withstand.”
I arrived in time to see on the screen a handsome and well-built naked man (actor Mark Ruffalo) in a pile of rubble, not-quite-modestly
concealed by bits of cinder block.
“Who’s that?” I pestered the children who were clustered around the
television.
“That’s Hulk!” they replied in gleeful unison
I settled in to watch. A security guard appeared on the screen, looking down at the naked Hulk who appeared dazed, trying to make sense
of where he was.
“Did I hurt anybody?” asks Hulk with a blurred tongue.
1
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“There’s nobody ’round here to get hurt” replies the guard, played
by actor Harry Dean Stanton. “You did scare the hell out of some pigeons though.”
“Lucky!”
“Or just good aim. You were awake when you fell.”
“You saw?”
“The whole thing! You went through the ceiling. Big and green and
buck-ass nude. Here [throws some clothes at Hulk]. I didn’t think these
would fit you until you shrunk down to a regular-sized feller.”
“Thank you.”
“Are you an alien?”
… ?”
“What
“From outer space? An alien [enunciating carefully].”
“Nah.”
“Well then, son. You’ve got a condition.”
2
This interesting scene was both similar to and different from many
of the diagnostic narratives I’ve presented thus far. Like others, the
diagnosis was used to make sense of the social world and the action
of its characters. In this case, the diagnosis (even though the diagnosis was pretty basic – “a condition” – and the person proclaiming the
diagnosis was not a doctor) was a way of communicating between
Hulk, the security guard, and the viewers that something wasn’t quite
right about Hulk (see figure 8.1). It was explanatory, pulling together
a range of phenomena, linking them, and giving a rationale for their
presence. The differential diagnosis3 was unusual, of course, “alien”
versus “condition.” It served an important place in the plot, giving
Banner some sort of framework via which he could accept his superhuman powers.
4
But this scene did something very different as well. For Banner, being
told he had a “condition,” even if only by a janitor, was not a moment
of transformation. It was a simple observation of fact and fate. It was
something that needed to be taken in stride, not something that disruptive. The destabilizing power was outside of the diagnostic moment.
“Having a condition” was obvious and matter of fact. The power of
naming, however, was disarmed by telling the story in terms other than
of transformation. Banner was not distressed by being told something
was seriously wrong with him. He just nods, grunts, and starts to get
dressed.
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8.1 Bruce Banner (Mark Ruffalo) and security guard (Harry Dean
Stanton), in The Avengers: Is the Hulk an alien, or does he
have a “condition”?
This diagnostic scene counters the tendency in contemporary narrative constructions, be they about diagnosis or something else, to focus
on personal change. It is a trend that novelist Damien Wilkins laments,
as it “leaves out other ways of being in the world.” It’s not that transformation stories don’t have their place, but there are other ways of
telling stories. Save the powerful about-turns for when they matter, he
argues: “The notion of personal change – change which is improving –
is both disreputable and unmoveable, tarnished and resolute, art’s
cheapest trick and its most generous gift.”5 Narratives don’t always
have to promise change. If we hearken back to the Greeks, the dominant narrative form focused on observing what happened to people as
they endured trials. The trials were administered by fate, and rather
than transforming the characters, they revealed them. They ride on, and
through, the chaos of life, with only fate as immovable. In contrast to
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the change narrative (like the one I propose in the Introduction at the
moment the doctor is going to tell us the name of some dreaded malady), it is not a moment where a power structure is revealed. The narrative affirms rather than changes the character.
6
Wilkins proposes that the personality “as mystery” rather than “as
transformed” communicates powerful messages in narrative, and
turns to “reliable hindsight” to deliver its import. Transformation is not
the only tale worth telling. Building upon Wilkins’s musings, I see a
clear appeal in the idea of considering diagnosis-as-mystery rather than
as truth. While the diagnostic moment is one in which information is
exchanged, laboratory values explained, and prognoses considered, it
is not a moment of truth and need not be a moment of transformation.
Diagnosis is not a moment of transformation for Superman, in the
All-Star Superman scene I described earlier. Superman’s diagnosis of
irreversible cellular apoptosis is actually the consequence of his heroism. As he saved the Earth from deadly stellar radiation, he absorbed
such levels of radiation himself that he now suffers from cell death.
His death is certain and proximate. Ironically, in this series, which is
based on superhuman transformation, the diagnostic moment is quite
blasé. Superman takes a moment and stares out into the world vacantly.
“there are … things I have to do first,” he finally replies, as he goes off
on another rescue.7 He makes no further reference to his apoptosis in
the volume, although he does occasionally think about his impending
death with wonderment.
Audré Lorde takes a similar stance in The Cancer Journals: “Every
once in a while I would think … ‘how do I act to announce or preserve
my new status as temporary upon this earth?’ and then I’d remember
that we have always been temporary, and that I had just never really
underlined it before, or acted out of it so completely before. And then
I would feel a little foolish and needlessly melodramatic, but only a
8
little,”
can ever have power over us again?”
… “for once we accept the actual existence of our dying, who
9
I return to that question of truth-telling, linked to the diagnostic moment. It’s one that physicians find difficult to tussle with. Not surprising, of course, if we look at the stories of chapter 3; the medical edifice
is built on this configuration. This is more than just an academic affair.
Why we should consider diagnosis to be about “truth” as opposed to,
say, information or explanation, is an important matter to ponder in
practice. When I have presented to medical audiences and asked doctors to consider thinking about telling a patient her diagnosis in terms
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other than that of “truth-telling” I am usually met with the protestation “But it is true! What do you want us to call it … lies?” This is a
false dichotomy. Stating that you are hungry, my name is Annemarie,
and there is traffic on the motorway is true, but uninteresting in that
capacity. These facts, as they are – and as is a diagnosis – are interesting in their sense-making, not in their truth. And referring to them as
“truths” reinforces the power differential between patient and doctor.
Allan Barry posits that it is precisely the power differential that creates “truth.” He explains the “differences between true and false do
not exist apart from the practice in which these values are produced
and evaluated and statements made to circulate as true, as known or
probable … the practice conditions situate truth amid the major asymmetries of social power, undermining its status as common good.”
10
It is not truth that counts as much as the implications of the information, the links that it creates with treatments and outcomes, the way in
which it enables the self.11 But it is by couching diagnosis in terms of
truth that pushes its function away from sense-making to wholesale
transformation. Who holds the keys to the truth then controls the discourse, adds weight to its assertions, and controls the models by which
health, illness, and disease are understood.
12
As I have demonstrated throughout the book, diagnosis is a powerful
tool in the telling of stories. It triggers them, it shapes them, it invents
them. Recall Stoddard Holmes’s story of her ovarian cancer. She told
a story that was untellable before her diagnosis. The diagnosis drew
together the events that otherwise bore no relationship to one another
without the unifying potential of, in this case, ovarian cancer.
In this final chapter, I want to turn to how all of these readings of
diagnostic narratives matter in the practical arenas of health and the
provision of health care. Let me tell another story. One of my grandsons has serious asthma. He has regular stints in the hospital and three
different-coloured puffers in his little medicine bag. While I was working on this manuscript, I had just received a copy of Ian Williams’s The
13
Bad Doctor
and I had left it on the table in the dining room. Ian drew/
wrote the graphic diagnosis chapter in this Diagnosis: Truths and Tales.
My grandson walked by and picked up the book, intrigued by the cartoon drawings.
“The Bad Doctor,” he deciphered carefully. “Why is the doctor bad?”
he asked, curious. He was enthralled by the pictures of stethoscopes,
nurses, and doctors with which he was so familiar, but he was too young
to understand the metaphysical angst with which Dr Iwan James was
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dealing in Ian’s graphic novel. I went to the graphic medicine website
to see if I could find something better suited to a six-year-old child.
I found a comic called Iggy and the Inhalers online. I opened it up in its
online version to show my grandson. Iggy and the Inhalers is a cartoon
about asthma that was designed as an educational tool for children and
uses the superhero genre to make the inhalers and the health threats livelier and more enthralling for the children it is targeting as its readership.
14
“This is about asthma,” I started to explain.
“What’s asthma?” he asked. And then the penny dropped. This little
boy didn’t know that he had a diagnosis. He knew when he was sick,
and he knew what that sickness entailed, but he didn’t have a name for
this sickness. Without a diagnosis, he could still take his puffers and
still understand that he was sick, but as we read through the cartoon
together, I became aware that children, like adults, become socialized to
diagnosis. And that socialization serves an important purpose.
My grandson grabbed on to the concept of diagnosis with great interest. It organized his symptoms and treatment in the way that Balint
described in 1964, even though with a child, there was no negotiation
involved. He is now able to explain bronchial inflammation and the
role of the preventer (Coltron the Controller) and the reliever (Broncho
the Bronchodilator) as if they were characters in The Avengers.
The proponents of graphic medicine would say “Aha!” and use this
as an example of how the graphic medium can bridge the gap between
clinical knowledge and personal experience of disease. Cartoons can
become an effective intervention for patient education and disease
awareness. The stories they tell are sometimes easier to assimilate than
more traditional written pamphlets.
But that’s not what is happening in The Avengers. With no educational intent, it nonetheless educated. The story of the more-than-human Banner/
Hulk reinforces what is already imprinted upon the viewers: a diagnosis
explains a lot of weird stuff. A social theorist might question the diagnostic
instinct. Must we diagnose all the variations of human behaviour? Isn’t
there some space for just accepting people as they are?
Well, clearly not when the condition makes us suffer. As grownups,
we’d be hard pressed to imagine health care without diagnosis. How
would we talk about what ails us in a way that our listeners would understand? Would we have to explain our fever, muscle aches, fatigue,
and runny nose each time we had the flu? How would we anticipate
the healing time from our mountain bike accidents without knowing
whether we had a fracture of a rib or a simple bruise? Each time we’d
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