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Just Listening: Narrative and Deep Illness



Practicing therapy with those living in "deep illness" is presented as entering relationships based on storytelling. As an aid to listening to the stories of the ill, three narrative skeletons, each underlying a certain type of story, are described, with the necessity of each type of story emphasized. This essay suggests how just listening to these stories is a professional role, how changes in the ill person's life can result from storytelling, and how to nurture these changes while still honoring each type of story. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Just Listening:
Narrative and Deep Illness
Arthur W. Frank
For seven days and seven nights [Job’s friends] …
sat beside him on the ground, and none of them
spoke a word to him, for they saw that his suffering
was very great. Job 2:13
This essay is about the stories told by those whom I have come to call the
“deeply” ill. Deep illness may be critical or chronic, immediately life-threatening
or long-term. Levels of functional impairment vary: some of the deeply ill are
seriously disabled, in pain, and require intense and constant medical treatment.
Others are in stable remission, with their illnesses effectively invisible to strangers
and even to work associates. What counts is the person’s own perception of
illness: Illness is “deep” when perceived as lasting, as affecting virtually all life
choices and decisions, and as altering identity. The essence of deep illness is to
be always there for the ill person, and the person believes it always will be there.
If illness moves temporarily to the background of awareness, that shift is only
For as long as one is deeply ill, there is no end in sight. Deep illness is lived
in the certainty that it will be permanent and with the fear of this permanence.
Some of the deeply ill have every assurance that they will be ill for the rest of
their lives. Others have some chance of recovery, possibly a good chance, but
illnessisdeepaslongasanylightthey can see at the end of the tunnel is, at best,
flickering. Whether someone remains deeply ill while in remission from cancer
or while enjoying a good prognosis following successful heart surgery is a matter
of that person’s subjective interpretation of her or his situation. Between two
and three years after my own treatment for cancer ended, I realized I was referring
to myself as someone who had had cancer, rather than someone living with
cancer. I had imperceptibly moved out of deep illness, and the shift bore little
relation to a medical definition of remission.
The Need for Stories
Several recent studies have described the ill as storytellers (Frank, 1995; Good,
Brodwin, Good, & Kleinman, 1992; Hawkins, 1993; Kleinman, 1988). The
clinical importance of ill people’s stories can be framed between two quotations.
The first is from psychiatrist and medical anthropologist Arthur Kleinman. After
noting that “physicians do not routinely inquire into the meanings of illness,”
Kleinman (1988) argues that “a powerful therapeutic alternative is at hand”:
There is evidence to indicate that through examining the particular
significances of a person’s illness it is possible to break the vicious cycles
that amplify distress. The interpretation of illness meanings can also
contribute to the provision of more effective care. … This key clinical
task may even liberate sufferers and practitioners from the oppressive iron
cage imposed by a too intensely morbid preoccupation with painful bodily
processes and a too technically narrow and therefore dehumanizing vision
of treatment, respectively. (p. 91)
Kleinman emphasizes “empathic witnessing … of the patient’s and family’s
stories of the illness” as central to clinical work (p. 10).
Kleinman’s emphasis is strategically placed on clinical efficacy. As a professor
of medicine, he seeks to convince his colleagues and his students to allocate time,
first in the curriculum and then in practice, to attending to the stories in which
patients reveal the meanings they attach to their suffering. My own concern is
less with the patient — the object of medical attention and intervention — and
more with the ill person — the one who is struggling to negotiate a life lived in
deep illness. Thus I balance Kleinman’s statement with a different voice, that of
the physician Rachel Naomi Remen.
Remen works with persons who have cancer, offering them not medical
treatment but empathic attention. Kleinman advocates attending to stories as a
functional part of clinical work. Remen moves outside her physician role
self-consciously placing herself as another who is wounded (see Remen, 1994,
1996). She makes attention an end in itself:
Being here [in the Commonweal retreat program] opens up opportu-
nities for people to be listened to, and heard, and validated. They’re not
stuck anymore. If you ask, “How does that happen?” I have to say I’m not
sure — but it does, and I trust that. I think the greatest thing you can
ever give someone else is your attention — not with judgment, but just
listening. (Quoted in Moyers, 1993, p. 345)
22 Healing Stories: The Use of Narrative in Counseling and Psychotherapy
No great distance divides these two quotations. Both Kleinman and Remen
clearly emphasize that stories count not just for the ill person but also for the
healthcare professional who, as Kleinman states so powerfully, also suffers within
an “iron cage” of reductive concerns.1Those who care for the ill also have their
own stories (Hunter, 1991; Kleinman, 1988, pp. 209–226; Williams, 1984). In
the most interesting and recent of these narratives (Campo, 1997; Hilfiker,
1994), physicians suggest that their capacity to know their own stories depends
on the extent that they can hear the ill. For professional care-givers to be persons
to themselves, they must first see and attend to the persons who are their
On the benefits of attending to the voices of the deeply ill, let me add a third
voice — my own. I study the stories of the ill because when I was in the midst
of my own period of deep illness — first heart attack, then cancer (Frank, 1991)
— I longed for healthcare professionals who would “audit empathically” (Kle-
inman, 1988, p. 17) the story thatI could not tell unless they listened. A story needs
a listener. I needed their gift of listening in order to make my suffering a
relationship between us, instead of an iron cage around me.ThusIfirstcameto
the concerns expressed in this essay by seeking to express what I needed when I
was ill.
Professional Use of Narratives
The importance of listening to ill people’s stories should be qualified by a
reservation about professionals taking up listening as a routine task. When
listening becomes a task, instead of what Remen calls a gift, then I believe much
of its therapeutic efficacy is lost. When “narrative” becomes another professional
technique for assessment, diagnosis, and intervention, then what Kleinman and
Remen value in listening becomes part of a routine and is experienced as such.
Narrative reduced to clinical technique leaves both clinician and patient inside
Kleinman’s iron cage of reductionism.
What Kleinman and Remen point toward, and what I wanted when I was
ill, is a mutual relationship of persons who are also clinician and patient. Stories
that are shared among persons can open mutual relationships; narrative reduced
Just Listening: Narrative and Deep Illness 23
1. Non-social scientist readers may miss Kleinman’s allusion to the German historian Max
Weber who, in 1905, concluded The Protestant Ethic and the Spirit of Capitalism with
the condemnation that capitalist acquisition had become an “iron cage” in an age of
“specialists without spirit.” This allusion broadens Kleinman’s critique to how society
has created an institution of medicine that mirrors its own values.
2. On physicians’ narratives, see Frank, 1997b.
to clinical technique may or may not be an improvement over biomedical
When I as an ill person offer someone my story, I reach out as one human
being to another. Stories certainly have content: they reveal the meanings that
the ill have constructed around their illnesses. But telling the story also implies
arelationship that I desire with those who care for me. For others to respond as
if my story has not touched their personal core separates the content of my story
from my desire for a relationship. Content then becomes “clinical material,” and
the gesture toward relationship is implicitly refused. Clinicians who attend to
the meanings that stories reveal while rejecting the relationships that telling
offers adopt a contradictory stance that will affect any future therapeutic relation.
The potential of narrative is to reorient our understanding of therapeutic
relationships, but until this reorientation is effected, “therapy” can be a mislead-
ing word when coupled with narrative. Exchanging stories fractures the asym-
metrical, dualistic assumptions of most doctor/patient or therapist/client
relationships. Clinical relationships are too often between subjects-who-know
and objects-who-are-to-be-known. The story, to be worth that name, is a
ground on which subjectivities meet in mutual knowing. This fundamental
human need is to know and to be known. Parker Palmer (1993) adapts a line
from 1 Corinthians 13 as the title of his book on educational relationships: To
Know As We Are Known. This title could serve equally well as an ideal of clinical
practice and a basis for revising clinical training.
Physicians and other professionals — I include myself as a university teacher
— do not routinely take seriously our own need to be known as part of the clinical
relationship. Yet unless the professional acknowledges this need, the client
remains the object of the professional’s privileged subjectivity; there is no
relationship in the sense of reciprocated feeling for the other, only an interac-
tion.3The pressure of being the one who is supposed to know is, of course, as
enormous as it is isolating. By contrast, knowing and being known each supports
the other.
The rest of this essay will describe the stories told by the deeply ill, with the
understanding that these stories are not being attended to as objects for chart
notation or as justifications for interventions. Instead, professionals hear stories
to know as they are known. An inextricable relation exists between knowing the
other, being known by the other, and knowing oneself. When this relation is
24 Healing Stories: The Use of Narrative in Counseling and Psychotherapy
3. In a period of “managed care,” professionals’ motivation to know the other in away that
excludes being known by that other may have less to do with professional socialization
or with personal desires for control and distance, and more to do with institutional
demands for “productivity.” Clinical encounters are overdetermined by institutional,
professional, and personal factors.
forgotten, attention ceases to be a gift and becomes reduced to instrumental
necessity; both parties find themselves back inside the iron cage.
One last loop needs to be thrown into the argument. Having argued for the
necessary mutuality of storytelling — that it is a gift relation, not a professional
technique — I need to add that, within the clinical relationship, a hierarchy of
needs exists. The deeply ill person is the immediately needy one, and this person’s
story deserves primary attention. Clinicians may share parts of their own stories,
appreciation with which the clinician receives the patient’s stories. To give the
standing this reciprocity but embracing it seems to me to be the beginning of
clinical work.
What stories, then, do the ill tell? I propose three basic narrative types of illness
stories. These are not specific stories but types of stories. Folklorists throughout
this century have pointed out the basic narrative structures that underlie many
particular tales. Children learn these narrative forms without knowing they know
them, and they then use them both to make sense of new stories and to improvise
stories of their own. Folk tales require a hero, or more accurately, a protagonist,
and the seeking is blocked by some antagonist. The eventual defeat of the
antagonist is often made possible by a helper who at first appears minor and
ineffectual but eventually provides the hero with an essential resource. On the
bare bones of such narrative skeletons, many different stories are fleshed out.
Oral storytelling in particular requires some recognizable narrative structure if
listeners are to find their way through the story.
What I present below are three recognizable narrative structures — the
skeletons on which many stories of illness are fleshed out. To grasp the
uniqueness of stories as they are told, it helps to be able to place a story in relation
to others: how does the immediate story build on the skeleton(s) it shares with
other stories? These three narrative structures also help to hear what is not being
told in any particular story. I propose these three narratives not as privileged
professional categories for decoding and classifying stories. Again, stories are not
material to be analyzed; they are relationships to be entered. But staying with a
story can be like finding a usable pathway through a thicket. I intend these three
narratives to be such usable pathways. As others leave my pathways and find
their own, they and those they listen to will be served all the better. But these
pathways can at least be ways of entering.
Just Listening: Narrative and Deep Illness 25
The Restitution Story
The narrative of illness that is culturally preferred in North America tells of
getting sick, suffering, being treated, and through treatment being restored to
health.4When the ill person’s answer to “How are you?” is to repeat everything
that treatment has already done, is doing, and will be able to do if the present
efforts fail, then a restitution story is being told. On closer listening, it is possible
to hear an absence: the subjectivity of the ill person who is telling the story has
been displaced by others. The clinicians — physicians, nurses, and therapists of
all sorts — are the heroes, the active players in the story; their subjectivities
determine the course of the action. Restitution stories are told by ill people who
narrate from the sidelines.
Restitution stories predominate in the talk of the recently diagnosed, and the
ideal of restitution recedes farthest into the background of stories of chronically
ill persons. Few published illness stories follow the restitution narrative: in the
logic of restitution, illness is nothing in particular to talk about once one is cured.
The conventional pejorative label for such talk is “dwelling on it.” Restitution
stories are better told by physicians themselves, in their own journals.5
Restitution stories are expected and encouraged by the most scientific (and
“heroic”) versions of medical practice. Because disease is an enemy and cure is a
version of conquering that enemy, the notion of talking about illness as mean-
ingful experience seems superfluous — even vaguely subversive — to biomedi-
cine. In the biomedical model, patients’ talk should be second-hand medical talk:
close enough to the physician’s version to insure compliance with medical orders,
but not so close as to suggest patients might make their own treatment decisions.
Because most illness conditions will end in the restoration of health, for most
ill people the restitution narrative is adequate. Problems arise as soon as restitu-
tion is no longer perceived as forthcoming: when the persistent cough turns out
to be lung cancer or the problem of balance is diagnosed as multiple sclerosis.
My own testicular cancer was first diagnosed as a urinary tract infection and
26 Healing Stories: The Use of Narrative in Counseling and Psychotherapy
4. The three types of narrative — restitution, chaos, and quest — are described with
extensive examples in Frank, 1995, chapters 4–6. In this essay, I have minimized
examples in favor of a more programmatic exposition.
5. I retain this paragraph even though the Internet seems to be providing a venue for the
proliferation of written, if not published, stories that are strongly oriented toward cure
and medical intervention. When ill people use their own web sites to marshal medical
information and resources, they become the protagonists of their own restitution stories.
Physician dislike of patients’ posting their medical progress — and bringing the
responses they get back to the clinic with demands for treatment — remains anecdotal
(see McLellan, 1997).
treated with antibiotics; for the weeks until my symptoms intensified, restitution
stories made good sense. But when those drugs failed to have any effect, I had
no narrative I could use to tell the story of my deterioration.
My lack of a narrative that could make sense of my decline into deep illness
was not a personal shortcoming of mine nor of my physician. North Americans
are culturally deficient in narratives to tell after the restitution narrative no longer
applies. What Kleinman calls the “vicious cycles that amplify distress” are cycles
of narrative lack: when people have no story to tell, they are isolated in their
suffering; they can achieve no critical distance from their pain. Other narratives
— those described below — are available, but too many healthy people — and
too many clinicians — do not attend to them. These other narratives are
disregarded until we need them, which for those who are ill means needing them
I hardly want to deprecate restitution stories. The restitution narrative
represents the triumphant optimism of medical science — a science that has
saved my own life — and commitment to the idea of cure deserves to be honored.
The problem occurs when we love the idea of restitution to the point of
demonizing illness. When we believe that no other narratives are legitimate, we
then pathologize other stories as depressing (a lay epithet) or as symptoms of
depression (the professional analog). The deeply ill, whose immediate reality
does not include restitution, are further marginalized. Those who have no story
that society judges worth telling feel they have no place in society.
The Chaos Story
Diametrically opposed to the restitution narrative is the chaos narrative. Here
is deepest illness: disability can only increase, pain will never remit, physicians
are either unable to understand what is wrong or unable to treat it successfully.
Medical problems proliferate into social problems: persistent ill health means
job problems, which mean loss of income, which leads to inadequate medical
care. The ill person is shuffled between bureaucracies, each claiming that they
need something from somewhere else before they can provide any benefits. Stress
exacerbates medical problems. Family responsibilities cannot be fulfilled: social
ties are lost, and the ties that remain are often more demanding of the ill person
than they are supportive.
Chaos stories can be heard most clearly in the responses they elicit in listeners:
when the listener feels sucked into a whirlpool and only wants to get away from
the story, then a chaos story is being told. If the dominant verbal style of
restitution stories is quotation from the clinician, the dominant style of chaos
stories is a series of incomplete sentences. Actions end with a shrug, not an object
of the verb. To complete a sentence is to imply a world in which subjects can act
on objects and have some effect. The world of the chaos story is devoid of
effective action. The passive voice reigns: “it” affects the teller. Events take place
Just Listening: Narrative and Deep Illness 27
in a perpetual present tense punctuated by “and then” constructions: “and then”
the physical problem, “and then” the family problem, “and then” the bureaucratic
hassle, and then how each of these makes the others all the more unresolvable.
Chaos stories reflect life lived at the bottom of the funnel of these problems.
People live chaos, but chaos cannot in its purest form be told.Totalkfromthe
position of chaos is to be unable to render one’s life as a story with any narrative
ordering of beginning, middle, and (anticipated) end: the story perpetually trails
off in a formless sequence of “and then” contingencies. To tell enables achieving
a coherent stance as to what took place and why. The coherence that stories give
to lived reality, along with the effect of sharing the story with a listener, offers
the teller some distance from his or her life. The chaos talk that cannot become
a story induces claustrophobia in the listener because of its lack of any distance
from immediate events. Chaos talk is submerged, gasping for air, and it soon
leaves the listener gasping.
To turn a life lived in chaos into a story about that chaos would effect a
transitory escape: at least a crack of light shines into a room that was entirely
dark. Paradoxically then, the chaos story that can be told is no longer total chaos,
and in that paradox lies a therapeutic opening. The clinical problem is not to
push toward this opening prematurely. The chaos narrative is already populated
with others telling the ill person that “it can’t be that bad,” “there’s always
someone worse off,” “don’t give up hope,” and other statements that ill people
often hear as allowing those who have nothing to offer to feel as if they have
offered something.
If our culture loves the restitution narrative that any illness can be cured, it
fears the chaos narrative that, with illness, troubles multiply. The chaos narrative
(that cannot betold) is about how thin the ice is upon which we skate, and how
cold and deep is the water into which we can suddenly sink. In my undergraduate
medical sociology course I show a film about a young man who discovers he has
before realized how suddenly he himself — anyone — might have a life-threat-
ening illness. By keeping the recognition of serious illness out of his conscious
awareness, my student had enjoyed what might be called deep health.Thechaos
narrative — with its vision of how awful life can get — threatens deep health.
To deny the living truth of the chaos narrative is to intensify the suffering of
those who live this narrative. The problem is how to honor the telling of chaos
while leaving open a possibility of change; to accept the reality of what is told
without accepting its fatalism. Sustaining this delicate balance requires, at
minimum, not being overwhelmed by the need to do something for the ill person.
If it were easy to change that person’s situation, others probably would have done
so. Any change will take time; thus, with the deeply ill, change is a problematic
goal. What kind of change may be appropriate is a difficult issue on which the
professional must be constantly guided by the ill person and his or her family.
The first thing a person in chaos needs is someone who will just listen, without
28 Healing Stories: The Use of Narrative in Counseling and Psychotherapy
attempting any change. Too quick offers of help may show the listener’s own
dis-ease with what is being told; compassion means, literally, to suffer with the
Job’s three friends first sat with him in silence for seven days and nights. They
became less useful when they began asserting their own answers to his question
of why he suffered. When Job eventually finds an answer to his suffering, it is
not one that admits articulation. The measure of his wisdom is his new capacity
for silence.6
As a society, our problem is how to honor the suffering that the chaos narrative
implies without accepting the remediable conditions — the lack of care — that
perpetuate this suffering. Primary among these remediable conditions is the
professional and lay tendency to pathologize chaos: to label the ill person as
“depressed” rather than to accept depression as a legitimate response to an awful
life. Everyone prefers to treat the symptom as labeled rather than attend to the
life. Compassion means just listening.
The Quest Story
When restitution can no longer be imagined, a life can be fashioned in which
illness is neither “accepted,” a word that is too passive, nor is it “welcomed,” a
word that romanticizes illness. Illness is lived as a quest: as a condition from
which something can be learned (although not in a didactic sense), and this
people who have had cancer is that they are certainly not glad they had it, but
they are grateful for how it changed them and their lives.
Quest stories are being told when the teller claims new qualities of self and
believes illness has been responsible for these changes. Quest stories are about
illness leading to new insights. They are based on a claim that the ill person now
sees in to a depth that illness has made visible. As I read the title of William
Styron’s (1990) memoir of suicidal depression, Darkness Visible,Styronstextnot
only makes the darkness of mental illness visible to readers; Styron also acknow-
ledges that illness has made an aspect of his own life’s darkness visible to him.
Perhaps the key phrase in quest stories is some version of “I can now … ” —
although the expression of this phrase is usually muted. If, by the time the quest
story can be told, illness is no longer chaos, if suffering now has some meaning
and even value, the reality of chaos is still recognized and respected. The quest
Just Listening: Narrative and Deep Illness 29
6. Professional education emphasizes articulate answers, which is another reason why
professionals have trouble hearing the wisdom of the ill. Professionals gain their status
through their capacity to articulate what others cannot say; articulation becomes a
standard of wisdom.
story fears being heard as a triumph over chaos; part of the lesson of deep illness
is that victories are always provisional.
7Toombs suffers from a progressive, degen-
erative multiple sclerosis. At first she seems to repudiate the idea of illness as
quest. She writes of giving a speech about her illness experience and being asked
by audience members “to state explicitly those things that I find ‘good’ about my
situation. Is it ‘enabling’ rather than ‘disabling?’ Has the experience caused me
to ‘grow’ in certain ways?” To these questions Toombs answers, “Harsh though
the reality may be, there is nothing intrinsically good about chronic, progressive
multiple sclerosis. Nothing” (Toombs, 1995, pp. 19–20).
Yet Toombs also writes of how she found, without noticing exactly when,
that she had begun “to reclaim my life” (p. 21). This reclaiming is not a sudden
epiphany but a slow, gradual process. Toombs writes of what she has gained
through illness — empathy for others’ suffering, friendships, and “a clearer view
of what is really important in my life” — but she is equally clear that these “do
not, however, make me glad that I have M. S.” (p. 20).
Gladness, at least about illness, has little place in the quest narratives;
“reclaiming” figures largely. What Toombs does not state explicitly, but what
her writing and speaking enact, is what illness has given her to teach. Summa-
rizing someone else’s quest is a precarious matter, but I would presume to say
that Toombs’ quest is to tell others about a world that illness has made her
uniquely prepared to articulate. Illness has not given her a voice, but she has
given a voice to illness. Another harsh truth is that I cannot imagine her writings
having the force they have if she were not ill; the quality of witness could not be
present. Toombs’ quest is to testify, and ultimately the quest narrative is
experience of illness do not want her testimony. They want her reassurance that,
if they become ill, they can find something “good” and “enabling” themselves.
In my interpretation, they want not a quest story but a restitution story. They
realize Toombs will not have her physical health restored, short of a miracle.
Thus she embodies every healthy person’s fear of illness without restitution. But
the audience members’ commitment to their own deep health can still be
preserved by imagining a restitution inlikemeasure.Theaudiencewantsto
believe that what Toombs has lost in one aspect of her life, she has gained
elsewhere. The quest story refuses this fantasy, even as it acknowledges what has
30 Healing Stories: The Use of Narrative in Counseling and Psychotherapy
7. Toombs’ writing was not available to me when I wrote The Wounded Storyteller (1995).
See also Toombs, 1992.
8. See Frank, 1995, Chapter 7, “Testimony.”
been gained. Toombs calls her response of “nothing intrinsically good” harsh,
but I read her whole story as imbued with a wisdom that can only come from
such harshness.
This wisdom is a matter of being exactly where one is, yet grateful for that.
Reynolds Price (1994) expresses this gratitude at the end of his story of being
rendered paraplegic by a malignant tumor inside his spine:
I write six days a week, long days that often run till bedtime; and the
books are different from what came before in more ways than age. I sleep
long nights with few hard dreams, and now I’ve outlived both my parents.
Even my handwriting looks very little like the script of the man I was in
June of ’84. Cranky as it is, it’s taller, more legible, with more air and
stride. It comes down the arm of a grateful man. (p. 193)
I have heard Price say, in a radio interview, that at least once a day he wishes
he could stand up for just a moment and stretch, but then he realizes his life will
be spent in his wheelchair. The quest story is cranky but grateful. If Price is more
explicit about his gratitude than Toombs, in part this may be because his
disability is not deteriorating while hers is. Or perhaps Toombs is even more
wary — Price is wary enough — of how much a healthy audience wants to dilute
the harsh realities of the illness. She knows how easily the quest story can be read
or heard as a restitution story, and she fears betraying (to use another harsh word)
the suffering that illness is.
Quest stories express an unflinching view of the reality of illness. In the face
of this reality, they look not to restitution but rather to what can be reclaimed
of life: what can be learned, and how this lesson can be passed on to those who
have not made their journey. Those who tell the quest story are ancient mariners,
returned to tell a tale that others need to hear but may resist hearing. If the teller
of the quest story is rarely pathologized in the way that the exemplar of the chaos
narrative often is — even society honors the quest storyteller — people will rarely
embrace quest stories. Why?
Listeners resist the quest narrative because they still need to believe in a
restitution that the teller has had to work to give up; much of the quest concerns
renunciation as a preface to reconstruction. Nancy Mairs (1996) writes of how
living with advanced multiple sclerosis requires her to give up comparison to
“The ‘her’ I never was and am not now and never will become,” lest she “make
myself mad with self-loathing” (p. 47). No one living in even moderately good
they enjoy being; it is far preferable to imagine that breakdowns can be fixed.
Physicians and patients reinforce each other’s commitment to restitution as the
only speakable eventuality. But quest stories carry the unavoidable message that
the restitution narrative will, one day, prove inadequate to what experience has
in store for many of us. Because, as Kleinman notes in the quotation above,
Just Listening: Narrative and Deep Illness 31
physicians prefer to concentrate on cure and do not routinely find meaning in
illness, they are not often disposed to listen to patients’ attempts to reconstruct
selves beyond restitution. I myself want a physician who concentrates on trying
to cure me; but because that cure may be unavailable, I also want a person with
whom I can share my story.
Thus listeners resist quest stories becauseof these stories’ assertion, sometimes
implicit and sometimes explicit, that the ill person has become what Price calls
a new self. Deep illness requires giving up the old self, “the person you used to
be” (Price, 1994, p. 182). Price’s advice is to “find your way to be somebody else,
the next viable you” (p. 183). He is clear that this quest will meet with the best
intentioned resistance:
Your mate, your children, your friends at work — anyone who knew
or loved you in your old life — will be hard at work in the fierce endeavor
to revive your old self, the self they recall with love or respect. … At the
crucial juncture, when you turn toward the future, they’ll likely have little
help to offer; and it’s no fault of theirs (they were trained like you, in
inertia). (p. 183)
Price hints at the subversive quality of quest stories — a subversion that
complements the chaos story’s subversive display of how bottomless despair can
be. Those living in “deep health” value objects, including themselves and those
they love, in ways that are often far more instrumental and conditional than they
are willing to acknowledge. Quest stories are about being forced to accept life
unconditionally; or, in the stories of Price, Mairs, or Toombs, finding a grateful
life in conditions that the previously healthy self would have considered unac-
Not all ill people are oriented to these authors’ level of introspection, nor do
all have the physical capacities that allow such articulate tellings of their stories;
rather, their stories have to be heard in how they live their lives. Physician and
journalist Lonny Shavelson tells the story of Pierre Nadeau, a trapeze artist, dying
of AIDS. Pierre’s illness was marked by a series of “lines in the sand” that he is
certain he would rather die than cross: getting AIDS, being plugged into oxygen,
having chemotherapy and losing his hair, wearing diapers. Yet he does cross each
of these lines (Shavelson, 1995, p. 55). As Shavelson describes him, Pierre does
not tell many stories, yet Shavelson quotes a hospice nurse who speaks of his
“amazing spiritual change” (p. 56). She seems to have heard, somewhere, a quest
story.9Perhaps this story is told most eloquently in Pierre’s willingness to cross
those lines he had said he would not cross.
32 Healing Stories: The Use of Narrative in Counseling and Psychotherapy
9. Of course, we do not know what is interpreted as Pierre’s “spiritual tran sformation.” We
know Pierre chose to continue to live, but was this choice motivated by a dread of dying,
The Pierre who draws his lines in the sand is closer to the values of healthy
society than the Pierre who crosses those lines and in the process undergoes
spiritual change. It seems a cliché to conclude that the skeleton underneath quest
stories is the unconditional acceptance of life, yet perhaps the notion of uncon-
ditional acceptance has become a cliché because of its profound and unattainable
value. Although quest stories are the narrative structure that is most eloquently
told in prose, perhaps the most moving quest stories are those, like Pierre’s, that
are lived (see Frank, 1997a). In finding terms to live with illness — not grateful
for illness, but grateful for a life that includes illness — those telling quest stories
show the healthy how they too could be living.
Just Listening
The three types of stories I have described are not intended to classify tellers
of particular stories. If they are diagnostic of anything, it is the culture and
relationships within which people create their stories. But these types are not
designed to diagnose. Rather they are listening devices: tools to help those who
attend the ill to understand — not to decode — what they hear. For those who
use these narrative types in their clinical work, three additional caveats are worth
making explicit.
First, all three narratives intertwine in most stories told by any deeply ill
person; few individual stories have only one skeleton. Often in a particular story,
at a particular time, one narrative type is foreground and the others are back-
ground. Shifts in foreground and background mapchanges in illness experience.
When listeners attend to which type of story seems more important than others,
they can hear where the ill person is. Knowing where someone is, is important,
but equally important is recognizing why they have to be where they are. I want
to arouse clinicians’ suspicions of assumptions that the ill person as teller ought
to be in some other narrative space than where he or she is.
Second, although strong cultural and personal preferences exist for one type
of story over another, all three types have their necessary places in all trajectories
of illness experience. Each deserves to be honored in its time of telling; I will
Just Listening: Narrative and Deep Illness 33
or did Pierre find some value in life that he had not anticipated? The hospice worker’s
observation, as much as I would like to credit it, could be more a projection of her own
need to find value in her work than it is an observation of Pierre’s reality. But matters
become more complex still: even if the quest story began as her projection, her story may
still have become his reality and given him a resource to continue living. What counts
is not who told which story first, but that, in a relationship with such intensity and
duration of care, each person’s story becomes the other’s. Unfortunately, within con-
temporary medicine, hospice care is singular for its intensity and duration of personal
care relationships.
discuss why and how in the following section. Because of this importance of
honoring the immediate story being told, my narrative types are the opposite of
a developmental theory that predicts ill people “moving through” stages of
narrative, pathologizing the failure to keep moving. The quest story is not a goal
toward which ill people ought to move, nor does the chaos story represent
personal or social failure.
Third, listeners will certainly have distinct preferences for one type of story over
another. I believe the proper initial use of the narrative preferences that we all
have is to pose questions about oneself as a listener. If listeners find themselves
wanting the ill person to move from one narrative type to another, that desire
may say more about the culture (professional and social) of the listeners, their
own anxieties and narrative commitments, than it says about the ill person.
My strong assumption is that people tell the stories they need to tell in order to
workthroughthe situationin whichthey findthemselves.Aslongasastorycontinues
to be told, the work of that situation continues to need doing. This assumption
hardly obviates the desirability of change. It does suggest that, for the deeply ill,
change cannot be hurried by external intervention; if anything, the processes that
nurturechangemaybecomeconfusedand set back. The corollary for clinical
practice is that, when time is limited by “managed care” and other constraints,
it is generally preferable to accept less change than to seek to hurry change by
pressing a patient toward a new story. Better yet, rather than the pejorative
implication of accepting less change, clinicians might think of change occurring
after, perhaps long after, their work of listening has finished. In Tim Brookes’
story of his mother’s hospice care, he recounts a hospice physician telling him
that often the value of their work is not apparent for twenty years (Brookes, 1997,
p. 276). I believe the truth of that statement, and I find very moving the clinical
conviction that allows this physician to conceptualize his work in that time span.
Change happens. Telling one’s own story can help move a person through a
particularly difficult situation by providing some critical distance.Whenastory
is well heard, it becomes something that teller and listener can talk about and
reflect on. When experience becomes an object for what is now a mutual
involvement, the teller gains some distance between what is being lived and what
is being told. Only at this distance can actions — including interpretations —
be perceived as possibly having alternatives, thus making change imaginable.
This critical distance is the key to any “movement” that may occur.
Clinicians, especially those who trade most in the therapeutic value of clients
reinterpreting their reality, may find it frustrating to remember how many
restrictions illness imposes, and how difficult change is within these. Impositions
are both external (by jobs, families, and “helping” systems themselves) and
internal (originating in the body’s pains and disruptions, moving to the mind’s
ill person begins to sort out what can be reinterpreted, what can be endured, and
perhaps what can be materially changed (quitting the job, getting improved
34 Healing Stories: The Use of Narrative in Counseling and Psychotherapy
pain-medication). Out of retellings some critical distance may emerge, and
perhaps some aspect of suffering can be assimilated to some “higher” scheme of
meaning. But, as I will emphasize in my concluding comments on intervening
in people’s stories, any higher assimilation of the meaning of present troubles
can only be discovered by ill people themselves in their own storytelling.
More than Just Listening
Richard Zaner’s (1993) work presents the hospital ethicist as one who
primarily listens to patients and helps them to sort out the ethical issues that are
already inherent in their stories, if not yet reflected upon. He wonders whether,
in doing this work, is he “any different from any good friend?” (p. 21). Clinicians
reading this essay may have the same question. How is the role of “just listening”
aprofessional role, making use of extensive training and — in a time of cost-cut-
ting — justifying financial remuneration?
I have argued throughout that one listens to ill people’s stories not in order
to fix them by doing something “therapeutic,” but rather to honor them. Again,
people tell the stories they need to tell in order to work through the situation
they are in. Efforts to change the person’s story, however well-intentioned, are
so easily mistimed or misguided. Toombs, quoted above, exemplifies resistance
to narrative intervention when she reacts against the questions posed by her
audience; questions that presuppose what sort of narrative (“enabling”) she ought
to be telling and coerce her to get it right.
The point of listening to Toombs is coming to realize that she already has it
right. But does every ill person have it right in every story they tell? The
paradoxical response is that every teller does have his or her own story right just
as that story is: not fair, not necessarily accurate in a medical or sociological sense,
but right as an expression of who and where they are. But — here’s the paradox
— what’s right can still change, and that change may also be right and welcome.
The resulting clinical problem could be called the nonelicitation of change. How
to do this nonelicitation returns us to Zaner’s question: What does the clinician
do that the good friend may not be able to do?
Myfirstresponsetothisquestionistowant torescue clinicians,as professional
listeners, from imagining their role as dichotomously opposed to that of the
friend. Instead, I understand the clinician as one who may enact certain
“friendship” roles using different resources. A common experience for the deeply
ill is to have many of their former friends disappear. In the world of deep illness,
friends die or become physically unable to visit with greater than average
frequency. Healthy friends defect from the tensions and demands of being with
about deep illness: their own fears of illness admit only restitution stories. Thus,
friends may be the least willing to sustain the ill person through struggles over
decisions that admit no “good” resolution: for example, whether to opt for
Just Listening: Narrative and Deep Illness 35
debilitating therapies that offer a small chance of remission, or whether to choose
palliative care with a better quality of life in the short term but no chance of
remission.10 Friends may be too threatened by the suffering involved in either
“option” to be useful in talking through this “choice.” The first requirement for
professionals is to have control of their own sense of threat. This control should
not preclude empathic sharing of the sorrow involved in having to make such a
choice, but such empathy cannot be weighed down with the clinician’s own fears
and regrets.11
Long-standing, personal friends may also be poor listeners to stories of
personal change because, as Price predicts in the quotation above, they want to
steer the ill person back to being the self who was. Friends are often least willing
to watch an ill person’s painful groping toward the self who may yet be; they
cannot hear the stories in which that new self assumes an increasingly real
identity. The clinician has the advantage of having no stake in the ill person
continuing to be who she or he was before illness. The clinician should neither
be threatened by changes that illness can precipitate, nor be overly invested in
seeing the ill person change. Anything beyond just listening is not directed at
fixing the story, but rather is about nurturing it.
Let me be honest about having my own preferences and ideals. When I
encounter ill people, I have to question whether I am nurturing their story or
fostering my own preference. Perhaps I have too many exemplars of illness in
my head — too many quest stories — and I have to work to separate what I
might hope for the person who is with me from that person’s own trajectory of
meanings of illness. Most therapies agree that people must discover for themselves
that change is possible; therapies begin to differ over how to instigate or facilitate
that discovery, and how fixed an idea the therapist should have of what change
ought to occur. In both respects, the instigation of change and the content of
change, therapeutic work that attends to people’s stories is far at the nondirective
end of the spectrum. As I suggested earlier, stories are not told as “clinical
material” in order to keep a “therapeutic process” moving.
Stories are told to cultivate relationships. In a relationship, we come to know
ourselves as we are known, and we may change with that knowledge. For either
person in a relationship, change is something that is allowed to happen. If I as
a listener welcome certain stories more than others because they fit my ideal of
self-knowledge, I limit my relationship with the person telling the story; I render
his or her story instrumental to some “higher” goal that is mine, not necessarily
36 Healing Stories: The Use of Narrative in Counseling and Psychotherapy
10. I draw this example specifically from Timothy Quill’s famous “Diane” case (Quill, 1993),
although the scenario is a common one.
11. Onempathyinmedicalrelationships,seeSpiro,Curnen,Peschel,andSt.James,1993,
especially the papers by Rita Charon, Jodi Halpern, and Stanley Joel Reiser.
the other’s. Relationships, and friendships, seem to require that the story be an
end in itself, although stories do change, and friends change with them.
Personal discoveries of meaning take place at unpredictable moments when
— tautologically — people are prepared to make that discovery. I can advance
the theoretical propositions that change occurs when the restitution narrative is
no longer viable and when the chaos narrative is no longer necessary, yet these
propositions have the unhappy effect of setting up the quest story as the kind of
narrative telos that I have been working to avoid. In practice, no one can say when
as both ill people themselves and their caregivers attest. How then can change
be nurtured, without being directed?
My first suggestion for nurturing change is to hold the utterly sincere belief
that the story you are hearing needs no change. The ill person’s whole life has
brought him or her to this story, and deep illness is no time for anyone to
repudiate how that life was lived. The ill person himself probably has sufficient
regrets and self-reproaches. The best opening to change may be the recognition
that the story the person is now telling is a perfectly adequate representation of
his or her experience, which it is.
Again, this message has to be entirely sincere. Sincerity depends on the
listener’s willingness to accept both regret and suffering as part of life, both
inevitable and remediable. I believe that clinical work becomes uncertain at best,
and evasive at worst, when clinicians lack their own beliefs — philosophical or
spiritual — about suffering. My own belief is that humans do have to suffer; call
it our existential destiny. But there are better ways to suffer; call those ways grace.
Whatever the clinician’s own beliefs, as a listener, she or he should assume an
attitude diametrically opposite to that of Toombs’ questioners, who want to see
12 The clinical attitude I recommend may
reject the chaos narrative’s supposition that suffering is only inevitable, but it
honors chaos as a necessary part of life.
To work with the deeply ill, I believe a clinician must be able to honor
suffering. Honoring suffering shapes the spirit of helping. The helper who
honors suffering can accept the “dark night of the soul” but also offers the
immediate, practical help others need. Part of this help is recognizing that people
are telling the story they need to tell, for a while, before they can move on.
A second aspect of nurturing is to help the ill person hear exactly what story
she or he is telling. Everyone is a storyteller, but few of us are sufficiently reflective
Just Listening: Narrative and Deep Illness 37
12. Even worse is the attitude of Job’s friends, who want to believe that suffering must be
deserved. Believing that suffering is an inevitable part of human life seems to free us
from believing that any individual’s suffering is deserved, while allowing us to see how
individuals continue to make choices that affect how they suffer.
about what stories we tell, in our lives and words. Only through reflection can
storytelling, and life, become truly ethical. To hear the story being told, my three
typesmaybeuseful.Doesthehopeofrestitution leave open other possibilities?
Can the chaos story be told until the teller can feels its claustrophobia as part of
the tale, outside of how life is being lived? And how is the present story turning
illness into a quest? Any actual story should include elements of all three
narratives, because each of these questions deserves reflection. Sorting out the
three narrative skeletons in any actual story does not direct the story away from
one story and toward another. The point is to show the ill person that the story
already contains different, immanent narrative directions: a direction that is now
mostly in the background could become foreground.
The third aspect of nurturing is that listening carries the message, which is
not self-evident for the deeply ill, that they are living a story that is theirs to tell.
Everyone else seems to have a story about the ill person, but few people have an
interest in that person’s own story. Very soon the ill person begins to doubt the
interest of his own perceptions. Nurturing begins and ends in the message that
no one knows their stories better than the ill themselves, that their stories matter
not just for themselves but for others, and that their stories can be told, and lived,
differently. Noting a change between what is said one day and the next, without
interpreting that change, affirms to the ill person that it’s his or her story, to tell
as he or she will.
The situation of the ill changes rapidly: the body’s condition changes; the
conditions of treatment and care change; professionals move to new jobs; friends
and family members get sick themselves, or defect, or reengage with the ill in
strengthened relationships. These changes require new stories, and every type of
story has its day.
But what if the ill person’s story seems to be overstaying its day? It is
seductively easy to observe that ill people get stuck in one narrative when they
would do better to have greater narrative flexibility. Flexibility is a popular
value.13 Less popular is the idea that people may need time and repetition to
work through all the possibilities of a narrative they have relied on throughout
their lives. Before flexibility comes the importance of learning what one’s own
inflexible narrative has meant for all these years: how this narrative was shaped
by one’s circumstances even as it shaped those circumstances, how it was once
owes to this narrative. Words like “stuck” fail to honor the stories that have been
a person’s life. If some stories now seem to limit their tellers, let us not forget
that the ability to tell these stories may have once been hard-won.
38 Healing Stories: The Use of Narrative in Counseling and Psychotherapy
13. For a brilliant analysis of the increasing status of flexibility as a cultural value, see Martin,
Many stories do need to change. Letting people tell their story repeatedly,
gently noting changes in that story, can help. Most significant to the process of
change, the person who is so attended is no longer alone.
Anatole Broyard (1992), when he was dying of prostate cancer, wrote that
his “first instinct was to try to bring [cancer] under control by turning it into a
narrative.” He describes stories as “antibodies against illness and pain” (p. 20).
Broyard’s ideal relationship to a physician was based in narrative: “I want to be
a good story for him, to give him some of my art in exchange for his” (p. 45).
Fortunately, most ill people have some art to exchange for their care. The
greatest clinical gift to the ill is to appreciate them as the “good stories” they are.
In these stories there is nothing to fix, only a great deal to listen to.
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Frank, A. W. (1995). The wounded storyteller: Body, illness, and ethics. Chicago: University
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Frank, A. W. (1997a). Enacting illness stories: When, what, and why. In H. L. Nelson
(Ed.), Stories and their limits: Narrative approaches to bioethics (pp. 31–49). New York:
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Hilfiker, D. (1994). Not all of us are saints: A doctor’s journey with the poor. New York: Hill
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40 Healing Stories: The Use of Narrative in Counseling and Psychotherapy
... On the other hand, the quest narrative as described by (Frank, 1995(Frank, , 1998 Although Frank (1995) proposes three typologies of illness narrative, he also acknowledges that each narrative can draw upon storytelling elements from one another, which reflects the complexities and vast experiences that can occur in serious illnesses. For example, a restitution narrative about a person's cancer in remission may encompass parts of a chaos narrative if the cancer were to reappear, drawing on the unpredictability and interruption that the cancer can cause in the individual's life. ...
... By relating the three typologies to journalist cancer stories in the media, it is worth asking what the purpose of each type of narrative is. Frank (1991Frank ( , 1995Frank ( , 1998 outlines the outcomes of each type of narrative which also helps to demonstrate the potential function of using the specific typology. When applied to the example of cancer, restitution is valuable in showing how an individual with their cancer in remission may reintegrate themselves into society, or even back to their original way of living everyday life before the illness diagnosis. ...
... Thus, building upon the proposition by Couser (1997) Although not explicitly referred to as a typology, catharsis may be considered in line with other typologies. Frank (1998) and other authors (Williams, 2011) mention that both storytelling and hearing illness stories have the potential to 'heal' and therapeutically help individuals back on to the path of recovery or facilitate transformation, or even help with adaptation to new life processes following a diagnosis of illness. ...
Full-text available
Cancer communication Oesophageal cancer experience Health promotion Health journalism
... Narrative: the person's subjective understanding and presentation of a situation and/or a series of events, including their perceptions of their own identity and life expectations. Since a narrative reflects one particular viewpoint, it is open to being reconsidered and changed (Frank, 1998;Launer, 2002). Our study focuses on narratives expressing painful and/or traumatic experiences. ...
... Providing care that takes the whole person into consideration has been shown to increase patient satisfaction and to reduce costs (Weiner & Schwartz, 2015). Thus, a skilled and confidently nuanced approach to patients' life stories is likely to benefit not only patients but also their doctors (Frank 1998;Gronseth et al., 2020). ...
Full-text available
Purpose Adverse life experiences increase the risk of health problems. Little is known about General Practitioners’ (GPs') thoughts, clinical concepts, and work patterns related to eliciting, including, or excluding their patients’ stories of painful and adverse life experiences. We wanted to explore GPs’ perceptions of the medical relevance of stories of painful and adverse life experiences, and to focus on what hinders or facilitates working with such stories. Method Eighteen Norwegian GPs participated in three focus group interviews. The interviews were analysed using reflexive thematic analysis. Results The participating GPs’ views on the clinical relevance of patients’ painful and adverse experiences varied considerably. Our analysis revealed two distinct stances: a confident-accepting stance, and an ambivalent-conditional stance. GPs encountered barriers to exploring such stories: scepticism on behalf of the medical discipline; scepticism on behalf of the patients; and, uncertainty regarding how to address stories of painful and adverse experiences in consultations. Work with painful stories was best facilitated when GPs manifested personal openness and prepared availability, within the context of a doctor-patient relationship based on trust. Conclusions Clearer processes for handling biographical information and life experiences that affect patients’ health are needed to facilitate the work of primary care physicians.
... The illness narrative refers to an autobiographical or biographical narration of an illness and its effect on that person's life. Illness narratives have received much attention for both identity construction and as a therapeutic mechanism during the process of recovery from a range of disorders (Frank, 1998), including TBI. Personal narrative approaches can build a strengths-based identity by supporting individuals with TBI to communicate with others, feel validated, learn about themselves and engage in a productive activity (D'Cruz et al., 2019). ...
Background: Exploring the perceptions of individuals with traumatic brain injury (TBI) towards their brain injury recovery across the continuum of care may offer insights to support engagement with rehabilitation services. Illness narratives are a potentially valuable avenue for examining perceptions of recovery that may influence engagement. Aims: The aim of this study is to explore the perspective of individuals with severe TBI towards their communication, brain injury and recovery experiences at 6 months, 1 year and 2 years post-injury. Methods & procedures: Discourse samples were obtained from 12 participants with severe TBI at 6 months, 1 year and 2 years following injury. A standardised protocol was used to elicit responses relating to perceptions of communication, the brain injury narrative, and perceptions of recovery facilitators. A thematic analysis of the discourse samples was completed. Outcomes & results: Three overarching themes were identified: experiences of communication recovery are diverse (Theme 1), varied experiences of recovery and rehabilitation (Theme 2), and continuous and lifelong journey of recovery (Theme 3). Primary communication concerns included presence of anomia, dysarthria, conversational topic difficulties, impacts of fatigue and memory difficulties. Illness narratives revealed the importance of re-establishing a sense of self and the perceived importance of a strong social network post-injury. Conclusions & implications: The varied nature of communication challenges and recovery after TBI highlights the need for holistic, multidisciplinary support as well as inclusion of family and friends in the recovery process. Social communication intervention is a perceived priority area for individuals with TBI. Illness narratives may also play a valuable role in therapy and help to shape post-injury identity. Managing the impacts of fatigue on communication and encouraging individuals to take ownership over their recovery and treatment may also help to improve patient outcomes. Supporting individuals to construct positive brain injury narratives that reaffirm a sense of self and include perspectives of family and friends may offer a potential future avenue for rehabilitation. Tailored but flexible, team-based service delivery models for individuals with TBI that span from acute to long-term care are warranted. WHAT THIS STUDY ADDS?: What is already known on this subject Communication recovery from traumatic brain injury (TBI) is complex and multifaceted. The perceptions of individuals with TBI toward their communication recovery is largely unknown. To establish rehabilitation services that meet the needs of these individuals, we need to understand how they experience communication recovery. What this paper adds to existing knowledge Social communication interventions were perceived as a priority for intervention by individuals with TBI. Fatigue was identified as perceived barrier to communication recovery. Taking ownership over one's recovery process was revealed as a facilitator of recovery. Illness narratives were found to strengthen post-injury identity over time. What are the potential or actual clinical implications of this work? Speech pathologists should prioritise social communication interventions and fatigue management for communication. Facilitating ownership of the recovery process and offering long-term supports are key aspects of treatment. Supporting positive illness narratives as part of treatment may facilitate post-injury identity construction.
... The audio files of each life story was listened to, with attention to the quality of the voice, the intonation, the timbre, and the sense of spiritedness, optimism or sadness. This gave a whole different sense of personhood to the textual interview and gave a further dimension which helped to shape an understanding of the emotional contexts of relationships, war memories, loss and happpiness (Frank, 1998). ...
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Understanding how to “Age Longer and Age Well” is a priority for people personally, for populations and for government policy. Approximately ten percent of nonagenarians reach 90 years and beyond in good condition and seem to have a combination of both age-span and health-span. However, the factors which contribute to human longevity remain challenging. Culture is a shared system of learning ideas, feelings, and survival strategies. It has a strong influence on each person’s psychological development, behavior, values and beliefs. Nonagenarians have rich life experiences that can teach us much about aging well; they are rich reservoirs of genetic, lifestyle and psychological information which can help understanding about how to live longer and better. Sibling or trio nonagenarians are important sources of family beliefs and behaviors upon which individual personalities may have been built. Their personal family histories and narratives are powerful tools that help to determine familial traits, beliefs and social behaviors which may help establish factors important in the siblings’ longevity. Using purposefully selected subjects, recruited to the Genetics of Healthy Ageing (GeHA) project in four European countries, this research used the simple life story and qualitative research methods to analyze contrasting and distinctive questions about the interface between the psychological and social worlds as presented in the nonagenarian siblings’ insights about their longevity. Their stories aimed to give better understanding about which psychological aspects of their common life journey and the degree of emotional support in their sibling relationships may have supported their paths to longevity. The most universal finding in each of the four European countries was that nonagenarians demonstrated high positivity, resilience and coping skills and were supported in social networks. Around this theme, nonagenarians reported “being happy,” “always cheerful,” “never melancholy” and having a contentment with a “rich life” and family relationships which fits with accumulating evidence that life satisfaction comes from a perceived self-efficacy and optimism. Most sibling relationships in this study, when analyzed according to the Gold classification, fit the “congenial” or “loyal” relationship type – demonstrating a healthy respect for the others’ opinion without overt dependence, which may help individual coping and survival mechanisms.
... 38 Second, sociological theories of chronic illness, including May's burden of illness theory, 41 biographical perspectives on chronic illness [42][43][44] and the sociological notion of stigma. 45 Third, emotional touchpoints of powerful feelings such as anger, fear or hope 46 -particularly in participants' experiences of healthcare, which may be interpreted using theories of good professional practice, 47 the therapeutic relationship 48 and continuity of care. 49 ...
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Objective To explore the lived experience of ‘brain fog’—the wide variety of neurocognitive symptoms that can follow COVID-19. Design and setting A UK-wide longitudinal qualitative study comprising online focus groups with email follow-up. Method 50 participants were recruited from a previous qualitative study of the lived experience of long COVID-19 (n=23) and online support groups for people with persistent neurocognitive symptoms following COVID-19 (n=27). In remotely held focus groups, participants were invited to describe their neurocognitive symptoms and comment on others’ accounts. Individuals were followed up by email 4–6 months later. Data were audiotaped, transcribed, anonymised and coded in NVIVO. They were analysed by an interdisciplinary team with expertise in general practice, clinical neuroscience, the sociology of chronic illness and service delivery, and checked by people with lived experience of brain fog. Results Of the 50 participants, 42 were female and 32 white British. Most had never been hospitalised for COVID-19. Qualitative analysis revealed the following themes: mixed views on the appropriateness of the term ‘brain fog’; rich descriptions of the experience of neurocognitive symptoms (especially executive function, attention, memory and language), accounts of how the illness fluctuated—and progressed over time; the profound psychosocial impact of the condition on relationships, personal and professional identity; self-perceptions of guilt, shame and stigma; strategies used for self-management; challenges accessing and navigating the healthcare system; and participants’ search for physical mechanisms to explain their symptoms. Conclusion These qualitative findings complement research into the epidemiology and mechanisms of neurocognitive symptoms after COVID-19. Services for such patients should include: an ongoing therapeutic relationship with a clinician who engages with their experience of neurocognitive symptoms in its personal, social and occupational context as well as specialist services that include provision for neurocognitive symptoms, are accessible, easily navigable, comprehensive and interdisciplinary.
Introduction Persistent low back pain (PLBP) is the biggest global cause of disability. Persons with PLBP experience biographic disruption and existential crisis. Guidelines recommend a biopsychosocial approach to management, with the emphasis on coping strategies. Purpose However, there is a paucity of research exploring the lived experience of persons who self-identify as coping with PLBP. Method The study used an interpretive phenomenological approach, analyzing transcripts from 1:1 interviews with six persons who self-identify as coping with PLBP. Poetic language was used to elicit empathic, embodied relational understanding and convey a richer understanding of the phenomenon that authentic quotations might not able to reveal. Findings and Conclusion Participants’ descriptions conveyed the sense of a journey, starting with the loss of a sense of self as they engaged in the pain battle, followed by a transition toward a new ‘normal,’ in which time, acceptance and trust in their own intuition were meaningful components. Although anxiety and fear were a continued presence, but they became more manageable. Society’s role in the coping process was significantly meaningful and is something which requires reflections from therapists’ and more widely.
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Elméleti háttér: A koronavírus világjárvány idején a krónikus légzőszervi betegek fizikai sérülékenységük mellett a mentális problémákra is fokozottan érzékenyek lehetnek. Betegségük sajátosságaiból kifolyólag nagyobb valószínűséggel rendelkeznek már meglévő tapasztalattal krízishelyzetek, súlyos egzisztenciális kérdések és az ezekkel való megküzdés területén. Ezeknek a korábbi tapasztalatoknak szerepe lehet a COVID–19-járvánnyal kapcsolatos veszélyeztetettség megélése szempontjából. Az egyre nagyobb számú kvantitatív kutatáson alapuló szakirodalom ellenére az érintettek szubjektív tapasztalatainak megismerése továbbra is hiányzik. Cél: Kutatásunk célja a krónikus légzőszervi betegek COVID–19-világjárvány általi veszélyeztetettségélményének, tapasztalatainak feltárása és mélyebb megértése volt kvalitatív, idiográfiás módszerrel. Az alábbi kutatási kérdésekre kívántunk választ kapni: 1. Hogyan viszonyulnak az interjúalanyok a légzőszervi alap- betegségükhöz? 2. Mit jelent a számukra a veszélyeztetettség megélése? 3. Hogyan hatnak az alapbetegséggel kapcsolatos eredeti tapasztalatok a világjárvánnyal járó sérülékenység megélésére? Módszerek: Vizsgálatunkhoz az interpretatív fenomenológiai analízis módszerét használtuk. A kutatásban 8 fő vett részt: 7 nő és 1 férfi, 29–60 évesek, a következő diagnózisok valamelyikével: asztma, krónikus obstruktív tüdőbetegség, cisztás fibrózis. Eredmények: A félig strukturált interjúk elemzése során három főtéma bontakozott ki: 1. légzőszervi betegség mint a mindennapokat meghatározó tapasztalat, 2. a koronavírus világjárvány hatása az énre és az identitásszerveződésre, illetve 3. a veszélyeztetettség megéléséhez való alkalmazkodás. A levegőtlenség a progresszív tüdőbetegségek legnehezebben tolerálható, leginkább félelmetes velejárója, amely élmény különböző módokon kapcsolódhat a félelemmel és a szorongással. A COVID–19 potenciális fertőző volta éles határvonalat húz a veszélyeztetett Én és a veszélyes Másik; vagyis az én és a világ közé, továbbá kritikus élethelyzetet jelent a társas szükségletek és vágyak kielégíthetősége szempontjából. Adaptációjukban alapvetően énvédő mechanizmusok, illetve érzelem- fókuszú stratégiák bontakoztak ki. Következtetések: A jelenlegi világjárvány jelentős hatást gyakorol az érintett betegek életére. A koronavírus elsősorban légutakat érintő természete miatt az érintettek veszélyeztetettként tekintenek önmagukra, a veszélyeztetettség megélése pedig alapvetően meghatározza életüket; döntéseiket, a világhoz való kapcsolódásukat, identitásszerveződésüket, megküzdésüket, s megkérdőjelezi a világ biztonságosságába vetett hitüket. A krónikus légzőszervi betegek tapasztalatainak feltárása kiemelt jelentőséggel bír a járvány pszichoszociális hatásait mérséklő stratégiák kidolgozásában.
Purpose Consistent with current literature, which highlights the role of narration as a key tool for exploring the processes by which people construct the meaning of their critical experiences the authors propose a theoretical and methodological model to analyse the narratives of illness and identify any innovative aspects. The generative model of mind presented refers to a semiotic, narrative and socio-constructivist perspective according to which narration constitutes one of the possible processes by which the affective and pre-verbal sense of experience is transformed into a meaning that can be symbolized and shared. Design/methodology/approach The onset of an illness represents a critical event which interrupts a person's life narrative, shattering his/her biographical continuity and undermining any assumptions of him/herself and the world. In particular, the model proposes a method of analysis, currently absent in literature, of the narrative interview Narrative Function Coding System (NFC) in order to grasp the ways by which four main narrative functions, namely psychic functions, are classified: the search for meaning, the expression of emotions, the temporal organization and the orientation to action. Findings NFC appears to be able to capture the complexity of the narrative process of construction of illness' sense-meaning making process, identifying both representative modalities of good functioning, which express a gradual process of connection with the variability of the experience, and modalities that express moments of disorganization and rigidity, which can persist throughout the time of treatment. The NFC represents not only a method for analysing illness narratives but also a method for tracking and monitoring the process of clinical intervention and change. Originality/value The sense-meaning making process perspective within the narrative socio-constructivist and semiotic framework of analysis proposed by NFC is currently absent in the literature. NFC can be a device for analysing the narrative process of sense-meaning making both for its use for clinical and preventive purposes. In addition we believe that this method, which focuses on the “form” and “way” of narratively constructing the subjective experience, rather than on the specific thematic content, can be used with all types of illness narratives, in particular the longitudinal one to explore the changes in sense-meaning making process.
Children's narrations of their experiences with cancer provide researchers/clinicians with an understanding of their lived experiences. Arthur Frank's illness narrative framework—restitution, quest, and chaos—was used to explore 11 children's experiences with cancer. Several participants identified with the restitution narrative of “overcoming” an illness, whereas others identified with the quest narrative of a changed identity after an illness. Two participants voiced emotional struggles with cancer, identifying with the chaos narrative. The Medical Agency theme encompassed children who appeared to be experts on their own illness experiences. These findings highlight the importance of centring children's voices and stories in clinical and research settings.
Pelvic floor disorders (PFDs), including fecal and urinary incontinence as well as pelvic organ prolapse, are common medical issues faced by one-third of all women across the lifespan. Despite this prevalence, many women are unaware of them, have highly stigmatized perceptions of them, and thus do not actively seek support or treatment for them. Given that PFDs can drastically impact quality of life to the point of social isolation and depression, this study examines chaos and desire as both lived and storied constructs that ultimately influence whether and how women with PFDs assert control over their social and corporeal disruption. Guided by narrative sensibilities and informed by semi-structured interviews with 22 women living with varying PFDs, our analysis highlights how chaos serves as a catalyst for continued chaos (i.e. barriers to seeking medical care), mitigation (i.e. resignation and/or public bodily containment), and/or change (i.e. motivations to seek medical care). These findings offer both theoretical and practical implications for helping individuals grappling with the dis-ease of PFDs (i.e. patients, providers, and practitioners) to envision and act otherwise.