02 - Illness, disease, pain, and suffering

Asymmetry of information

• The recipient of care cannot judge the effectiveness of care

articulate body

the ability of providers to FEEL their patient's experience and acknowledge the vulnerability and difference in bodies, including their own

Imagination

• Details of a patient’s world are revealed through the stories they tell

• Act of telling and listening to stories depends on imagination

When clinicians talk about purpose and meaning in the life of an individual

no longer science but imaginative work of arts and humanities

Storytelling for patients 

• For patients, storytelling is a matter of life and death

• Illness stories must be at the centre of clinical encounters

medical decision making

the decisions made in a medical setting pertaining to a patient's care and health, often affected by the person's abiliity to imagine and engage in an embodied process

embodied, relational process

give a tangible or visible form to care, relating it back to the patient and the provider, rather than seeing it as transactional or idealized. Care should be rooted in daily practices that respond to and attune to the changing needs of an unpredictable body-mind

Sociological imagination in health 

• Acknowledges the ways an individual’s biography and health emerge from historical processes that occur within larger social and economic contexts

• This imaginative reach allows our perceptions to move past narrow focus on individual biological function into multidimensional lived experiences of human beings

• How clinicians imagine human worth and dignity has great consequences!

Fractured self

• Patients struggle for language to articulate their lives

• Difficult to give an account of one’s self amidst the disorienting experience of illness and disability

• This may “fracture the self” (p. 113)

• Ordinary language may be insufficient to describe this suffering

• Need a voice beyond words, a new language

suffering

the state of undergoing distress, pain, or hardship

 Imagination in Clinical Practice

• Imaginations of clinicians need to be trained to recognize metaphor

• Begin to hear in patients’ stories “the main points of metaphor: the

achievement of intimacy”

• Exchange: maker of metaphor offers a concealed invitation that the

listening interprets and accepts → constitutive of community

Imagination and Awareness

• Imagination allows the mind to be aware of reality that exists at the

margin of the mind’s current experience

• Expands what is available to rational thought and language we use to

express thought and feeling

• Reality will always be larger than our language

Imagination and Discovery

• Need imagination for leaps of discovery

• Language of all kinds (words, painting, music, drama, dance, etc.) help

the imagination

• Francis Bacon:

• The excellent question is half of wisdom

• (The source of the excellent question is imagination)

• Imagination is the origin of any hypothesis that leads to discovery

• Apprehends invisible pieces that make a whole from pieces à

meaningful connections we haven’t seen before

Imagination and Rationality

• Imagination and power of rationality are always working together

• All great discovery works in this way

• “Art renders the familiar world strange” (p. 115)

Strangeness of disembodied medicine

• Contemporary medicine is disembodied

• Primary articulations (accounts) of the body are lab values, images, reports

• Medicine’s articulations of the body are held to be true, objective, and primary

• But multiple articulations of lived body by patients are seen as secondary and “subjective”

• Rather than rejecting the hierarchies of medicine, we can supplement it

Fractures

• Body is the ground of our history, memory, trauma, desire

• Illness fractures this body

• Fractures can be reintegrated, even if physical condition does not

leave (and vice versa!)

• “This is why a cure may not necessarily heal, and healing does not

depend on a cure” (p. 116)

articulations

explanations, presentations, accounts (of the body)

disembodied

the disconnect from the body due to being overly objectified

Embodiment

• Requires the integration of all these dimensions in the human being

• Ancient wisdom: we are not born fully human, but become so as we

cultivate ourselves and our relations with others

• Recognize that the physical and metaphysical are interwoven and

inseparable

• Goes against biomedical materiality

• Excludes poetic materiality:

poetic materiality:

way of accounting for how imagination wraps around and shapes our experience across personal, social, historic dimensions

Enactivism

• Active, interchanging relationship between observer and observed

• Human cognition emerges dynamic interaction and co-creation

between perceiver and environment

• “Enactivism” holds that observers actively shape the worlds they

perceived à the world is enacted in this relation

Care as a relational embodied process

• Medical education needs to cultivate an understanding of care as

something neither idealized nor transactional

• Instead, “care is a process rooted in daily practices that attempt to respond and attune to the changing needs of unpredictable bodyminds” (pp. 116-117)

• This is deeply imaginative!

• Medical education must incorporate practices from arts and

humanities à deeper view of what the body is, what illness is, what a

person is

• Artistic inquiry is a practice that asks questions and makes discoveries

through making à giving form to imagination

• Embodied artistic inquiry helps clinicians gain “articulated bodies” à

bodies that have learned to be affective

• Gives form and voice to questions whose answers can never be

complete

• Art Frank: Four key distinctions

• Disease vs illness

• Patient vs ill person

• Medical history vs ill person’s story

• Treatment vs care

Disease vs illness

• Disease: Condition of the body reducible to biochemistry (“bare disease”)

• Illness: An experience that “involves a biography, a reflective consciousness, multiple relationships, and institutions”

Patient vs ill person

• Patient: Identity imposed upon a person by medical/ health institutions

• Ill person: “a patient only some of the time and…remains many other things as well” means that illness does not erase the rest of who they are.

Medical history vs ill person’s story

• Medical history: An understanding of the patient in terms of the nature of disease. “Set parameters” of relevant information that create “illusion” of knowing the ill person

• Ill person’s story: The medical patient becomes delimited by his or her history. If the storytelling is truly a relationship, the [ill person] storyteller is invited to reinvent his or her own character… what the storyteller needs the listener to know about him or herself, to appreciate that self.

Treatment vs care

Treatment

• “Service” with monetary value

• Instrumental; requires technical expertise

• Defined boundaries between bodies giving and

receiving treatment

• “Untroubled by its use of power as a resource”

Care

• “Gift”

• Involves emotion as well as cognition

• Relational nature of giver and receiver

• “Sensitive to asymmetries of power”

difference between treatment provider and care giver

• The treatment provider acts through precision and control — their body is a tool for technical work (steady hands, medical procedures).

• The caregiver engages with feeling — their body is present and responsive, sensing the other’s pain while maintaining enough emotional distance to stay effective.
  → This balance is key: too detached = cold; too emotionally involved = overwhelmed (“engulfed”).

“fundamental asymmetry”

Tensions

fundamental asymmetry, conflict/strain between ideas

Instrumental value

a means to an end, doing it to achieve another goal

Intrinsic Value

something inherently valuable, there's value in in of itself

Difficulty in representing depression?

• internality 

• Depression is internal, invisible, and deeply personal.

Difficulty in representing pain?

• Physical and psychic

Pain can be both physical (bodily suffering) and psychic (emotional or mental anguish).
→ These two forms often overlap — emotional trauma can manifest physically, and vice versa.

Why are medical images “never simply unmediated”?

Because they don’t show the body directly — they’re shaped by technology, interpretation, and perspective. Every image is a constructed view of the body, not pure reality.

Mediation

having something in between. In interpretation, it is mediated by the knowledge and experience of the provider who is looking at the image

How do cultural influences shape medical images?

Cultural assumptions affect what is imaged, how it’s labeled, and what meanings are attached.

What is the “imaginative leap” in medical imaging?

Clinicians must imagine the patient’s experience of pain or illness — because the image alone can’t show suffering.
→ Understanding requires empathy and imagination, not just data.

What is ‘representation’?

• Literary critic WJT Mitchell describes representation as the use of

signs that stand in for or take the place of something else

• Representation refers to the use of (X) to:

• Look like or resemble something or someone

• Stand in for something or someone

• Present a second time; to re-present

The means of literary representation is

language

The means of visual representation is the

image or icon

Medical images generally assumed to be ___ RATHER THAB __ 

Mimetic (content directly represented/ shown; fixed meaning)

Diagetic (told, recounted, interpreted)

Medical sciences claim to represent the body objectively

Medical sciences claim to represent the body objectively through brain imaging and the neurosciences or evolutionary biology or psychology, approaches that offer a single, unambiguous pathway without much attention to who sees and what is claimed to be seen”

Medical images claim to mirror aspects of the body

Medical images claim to mirror aspects of the body, whether imaged externally by photographs or internally by x-rays or fMRIs, and thus they claim to represent bodies as they actually are

key to understanding communication of pain

• Imaging – and imagining – human body as something to be seen, turned insight out, revealed to sight is key to understanding communication of pain

Pain

• Pain is inherently subjective

• There is no way to comprehensively measure or ‘see’ objective reality of pain

communicating pain relies

communicating pain relies on patient’s account (narrative)

On the other hand, the listener (clinician) will be similarly molded or influenced to receive a story of pain

gerunds

“nouny” verbs ending with –ing

The McGill Pain Index

Clinical tool developed at McGill University (1971) to evaluate a

person experiencing significant pain

• What does your pain feel like?

• How does your pain change with time?

• How strong is your pain?

Provides a list of gerunds as a way of articulating pain

After completing the questionnaire, users will have selected seven words that best describe their pain

Facing pain

• Pain scales attempt to capture the ‘face of pain’ as objective reality

  • “whatever the motivation of the sufferer and, perhaps, whatever his or her cultural location” (p. 175)

• Drive to universality is important

  • Certain groups of people throughout history have been understood to have different thresholds of pain

  • Women, people of colour, people with intellectual disabilities, animals

Photographing pain (late 19th c.)

• Charles Darwin’s Expression of Emotion in Man and Animals (1872)

• Darwin argued that emotions are mimetic (unmediated) physical expressions of experience

• Use of photographs to prove continuity of pain expression across species

Existential suffering

• Deep psychological and emotional distress when confronting

meaning, purpose and value of life in face of mortality

• Fears of the unknown, loss of identity, perceived pointlessness of life

• NOT = pain

• We can suffer even if there is no pain (e.g., grief) and vice versa

• Nociception =

detection of a painful stimulus, physical phenomenon

Suffering

the specific distress that occurs when persons feel their intactness and integrity as persons are threatened or disintegrating, and continues until the threat is gone or intactness or integrity are restored… Bodies do no suffer; only persons suffer.

Subjective knowledge and suffering

• Objective knowledge is needed in the

practice of medicine

• But good clinicians need subjective

information to address suffering, specifically

• “to hear, feel, see, and smell everything

Suffering occurs because the

integrity of the person is threatened

Loss of purpose and meaning

• All suffering involves loss of or profound change in

meaning and purpose of one’s life

• Purpose of being “me”

      • Every moment, every movement, thought, action are

expression of purpose

       • “My purpose creates me and creates my world”

• Loss of purpose is a breakdown of the self

Integrity of the person

the sense of self - if broken or damaged, by illness or trauma alike, can threaten the person's well being