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Illness Narratives

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When Dr. Arthur Kleinman was a medical student he cared for a seven-year-old girl who had been badly burned and had to endure removal of her burned skin daily, which was excruciatingly painful. Kleinman’s attempts to distract the girl during these ordeals were ineffective, until on one occasion he asked her to tell him how she was able to tolerate the painful procedure day after day. From that point on, rather than screaming and fighting her doctors, she tried to describe to Kleinman what the experience was like for her. Kleinman later wrote: “But whatever effect I had on her, her effect on me was greater. She taught me a grand lesson in patient care: that it is possible to talk with patients, even those who are most distressed, about the actual experience of illness, and that witnessing and helping to order that experience can be of therapeutic value.” [1]

Illness, especially illness that doesn’t go away, creates a profound disruption in a person’s life. Although we are aware that change happens continuously and no two days are completely alike, when we’re healthy we have expectations that our lives will continue tomorrow pretty much the way they do today. We get used to believing that our bodies will function the same from one day to the next and we’ll be able to accomplish what we’ve set out to do. But chronic illness destroys those expectations; ill bodies are no longer dependable or predictable and may even feel like an enemy. Many plans, both near-term and far, may need to be put on hold or abandoned altogether.

Chronic illness can create chaos in people’s lives. For many people, it’s like a fracture that splits a person’s life into a Before and After. Before the symptoms appeared or the diagnosis was confirmed, life may have seemed manageable, familiar, and predictable. Afterwards, nothing feels familiar, uncertainty pervades every part of life, and it may not be possible to predict things as basic as what your energy level is going to be on any given day.

For some people, the chaos never goes away. No purpose can be found in suffering and no way is discovered that will help re-establish order or control in this distorted new life. But others are able to view their ordeal (at least some of the time) as a type of journey, whether it is physical, emotional, spiritual, political or moral. And from this standpoint they find a platform from which to tell their story with purpose, even as the story unfolds. They do this not to display their own heroism in the face of adversity or to offer hope and a happy ending to others in similar straits but because their illness has changed them, and telling their story becomes a way for them to discover how they have changed. [2]

Telling a personal illness story to others can help the ill person in a number of ways. First and foremost, the creation of a narrative to describe an illness experience helps bring order to the chaos. If illness is a journey, it is one that makes a mess of the planned route. Describing what it’s like to take that trip helps people remember significant points along the way that, when looked back on, can add up to a coherent story. Telling the story, in effect, takes the disconnected fragments of the illness experience and creates a story out of them, one that points to a new destination. Roger Schank, a psychologist who has written about story and memory says, “We need to tell someone else a story that describes our experience because the process of creating a story also creates the memory structure that will contain the gist of the story for the rest of our lives.” [3] Telling the story helps create a new map for the ill person, a picture of what happened, when it happened, who was there, and how the ill person responded to it all. Without the story there is no map.

A second benefit of illness narratives is the value they provide to others who are struggling with a chronic illness. Patients usually get information about their disease and how it’s treated from their healthcare team. But patients have other needs as well, such as dealing with their emotions, reactions of family members, side effects of treatment, comments from strangers, fears of disability or death, and living with uncertainty. There’s no substitute for hearing an illness story from someone who’s been there and can speak realistically about what it has been like.

But it’s not only people with chronic illnesses who can benefit from reading or hearing illness narratives. Healthcare professionals, especially physicians, would learn much more about their patients and the illnesses they have if they would attend to the lived experience of those they treat.

What the ill person pays witness to is worlds away from what medical descriptions of disease and treatment convey. Unfortunately, the lived experience of the patient is usually ignored by medical practitioners. As a result, aside from telling the doctor about symptoms, little is asked of the person who has the disease, other than to be still and well behaved while being acted upon. The result is that the doctor never learns about the effects of the illness and its treatment on the individual or what preferences the patient has around quality of life issues. This happens even though patient-centered care and shared decision making are currently considered important components of quality healthcare. [4] This can create a rift between the agenda that the patient has and the one that the doctor applies.

Educating physicians and other healthcare personnel about preferred ways to communicate with patients is a complex and long-term endeavour. But it is a necessary component for the well-being of patients with chronic illness. And it is no less important for the practitioner. As Kleinman states, when the patient’s experience is included in the conversation, “Practitioner becomes a moral witness, neither a judge nor a manipulator. Patient becomes an active colleague, not a passive recipient. Both learn and change from the experience.” [5]

In fact, because most of us will become chronically ill at some point in our lives, reading or listening to illness narratives benefits us all. We will all travel that road at some time or assist someone else who has to travel it. Learning what it has been like for others can help prepare us for what we will face.

A third benefit of illness narratives is that creating a story that others can read or hear reduces the isolation that ill people often experience. Medical care is almost always delivered to individuals, sometimes with a family member in attendance, but rarely in the company of other people who have the illness. As Arthur Frank says, “The danger for ill people is that they are often taught how to be ill by professionals.” [6] So after the diagnosis is made, ill people will know what treatment plan they’ll be on, but they will probably not hear anything about how to incorporate their illness into their life story. And since most serious chronic illnesses affect every part of a person’s life, the effects will be widespread and profound.

Additionally, when patients tell their story to others they help promote understanding of the lived reality of their illness. They connect with others who have the same illness and open up lines of communication that can provide emotional support.

By telling their story ill people also confront the stigma of illness and disability head on, challenging stereotypes and societal assumptions about how ill people should act, feel, and talk. People with visible illness or disability are often stared at, patronized, ignored, or spoken about as though they can’t understand speech. Those whose illness is invisible, such as chronic pain patients, often find that their experiences are not believed because they don’t “look sick” and they are often told to “snap out of it” or “you’ll feel better if you just change your attitude.”

It is rare for a person with a chronic illness to have the opportunity to tell their story without the listener interrupting the narrative. Listeners often want to offer help by suggesting alternative treatments or specialists or recounting the experiences of others who had “the same thing.” What many healthy people don’t understand is that often the best way they can help is by listening to the ill person’s whole story without interruption.

The offer of unsolicited help may often be a response to the listener’s discomfort or fear. Healthy listeners may cut the story short so they can offer the ill person a solution that they believe will lead to a happy ending. But it also results in a false narrative for the ill person. The listener may feel better, but the ill person is left feeling more isolated than before.

When we become patients our vulnerabilities are exposed. The medical care system (temporarily) removes from us our clothes, home, biography, and even our name--things that protect us and identify us as individuals. In exchange we become part of the medical narrative, bending to its routines, rituals, accepted behaviors, and timetables.

By telling her illness story, an ill person not only reclaims her identity but also creates a narrative that helps put her world back together. Arthur Frank calls ill people “wounded storytellers” to minimize victimhood and instead emphasize activity. He says, “The ill person who turns illness into story transforms fate into experience; the disease that sets the body apart from others becomes, in the story, the common bond of suffering that joins bodies in their shared vulnerability.” [7]

[1]  Kleinman, Arthur. The Illness Narratives: Suffering Healing, and the Human Condition . New York: Basic Books, Inc. 1988, xii.

[2] Frank, Arthur W. The Wounded Storyteller: Body, Illness, and Ethics . Chicago: The University of Chicago Press, 1995.

[3] Schank , Roger C. Tell Me a Story: A New Look at Real and Artificial Memory . New York: Scribners, 1990, 115. Quoted in Frank, Arthur W. The Wounded Storyteller , 61.

[4] Ospina NS, Phillips KA, Rodriguez-Gutierrez R, et al. “Eliciting the patient’s agenda--secondary analysis of recorded clinical encounters.” Journal of General Internal Medicine , 2018. Published online July 2, 2018. https://link.springer.com/article/10.1007%2Fs11606-018-4540-5

[5] Kleinman, Arthur. The Illness Narratives , 246.

[6] Frank, Arthur W. The Wounded Storyteller , 159.

[7] Frank, Arthur W. The Wounded Storyteller , xi.

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Illness Narrative Essay

My Illness Narrative Sharing and listening to the illness narratives in class is an experience that I do not think I could ever forget. Listening to people share their raw emotions and stories of struggle and illness was eye opening, My own illness narrative could be described as a quest narrative and more specifically an automythology. This is because as I stated in my presentation, I became a better person, adopted skills that helped me deal with my father’s illness , understood what it is like to have someone close to you change due to a disease. The illness narrative allowed me to express the dis-ease of my family and my dad due to his disease. I told the story of my father’s diabetes and how it affected my life. This is my illness …show more content…

I was probably overthinking it but I didn’t want to talk down my dad in my narrative. He is someone I look up to and cherish and I didn’t think it was a necessary detail to include. I decided to add pictures to my illness narrative because I think it humanized him a little bit as I sort of demonized him by using him as the source of my illness. I added a picture of me and my dad from about 16 years ago when I was about 5 and he was young. It was important for me to show a picture of us at a younger age because I think it adds innocence as I wanted to humanize him, it was perfect. Next I added a picture of my dad with my mom. This was to show appreciation and was also a reminder for me to include my mom who was also affected by my dad’s illness. This was to show that it was not just affecting me but my family as well. Lastly I added a silly picture of me and my dad from a couple of months ago. I wanted to keep my narrative light and did not want to associate darker emotions with my illness. It was very important to me that I did not get emotional, socially I am not ready for that type of exposure to my classmates. As I was chosen to present the first day of presentations, I knew I would have a full house. No one misses the first day due to fear of docked points. This was something that my anxiety heavily considered when I was constructing my narrative. I knew I did not want to get emotional and

The Fault In Our Stars: The Impact Of Illness On Narrative

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Home — Essay Samples — Nursing & Health — Cancer — How Cancer Affect Your Life Immediately: IIlness Narrative

How Cancer Affect Your Life Immediately: Iilness Narrative

• Categories: Cancer

About this sample

Words: 1610 |

Published: Mar 28, 2019

Words: 1610 | Pages: 4 | 9 min read

Works Cited

• Mukherjee, S. (2011). The Emperor of All Maladies: A Biography of Cancer. Scribner.
• Sacks, O. (2015). My Own Life. The New York Times. Retrieved from https://www.nytimes.com/2015/02/19/opinion/oliver-sacks-on-learning-he-has-terminal-cancer.html
• Kalanithi, P. (2016). When Breath Becomes Air. Random House.
• National Cancer Institute. (2021). Acute Myeloid Leukemia. Retrieved from https://www.cancer.gov/types/leukemia/patient/adult-aml-treatment-pdq
• American Cancer Society. (2021). Acute Myeloid Leukemia (AML). Retrieved from https://www.cancer.org/cancer/acute-myeloid-leukemia.html
• City of Hope. (2021). Bone Marrow Transplantation. Retrieved from https://www.cityofhope.org/research/bone-marrow-transplantation
• National Marrow Donor Program. (2021). Bone Marrow Donation. Retrieved from https://bethematch.org/support-the-cause/donate-bone-marrow/
• Mayo Clinic. (2021). Chemotherapy. Retrieved from https://www.mayoclinic.org/tests-procedures/chemotherapy/about/pac-20385033
• American Society of Clinical Oncology. (2021). Managing Side Effects. Retrieved from https://www.cancer.net/navigating-cancer-care/how-cancer-treated/chemotherapy/managing-side-effects
• American Cancer Society. (2021). Living as a Cancer Survivor. Retrieved from https://www.cancer.org/treatment/survivorship-during-and-after-treatment/staying-active/nutrition.html

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Gathering Information: The Illness Narrative

As we gather a patient’s history, we seek to both diagnose their disease and to understand their illness. For lay people, these two terms – illness and disease – may mean the same thing. But for physicians, there is a critical difference.

Illness describes a patient’s unique experience of symptoms, of being sick, which is influenced by biology, context, culture and support system. To provide patient-centered care, we must encourage people to share  their  story and elicit  their  perspective: the concerns, ideas, expectations, needs, and feelings about their illness.

Disease, on the other hand, can be defined as a disruption in normal biologic function at the cellular, organ, or system level. To diagnose a disease, we compare the details of our patient’s symptoms and signs with what we know about different disorders, using clinical reasoning to select and test for the most likely.

Most patients with a disease also have an illness – they somehow feel unwell – but many do not. A common example is diabetes, which is asymptomatic in its early stages but causes severe complications if untreated. And different people may be affected very differently by the same disease – their diagnosis is the same, but their illness is not. To optimize a patient’s care, we need to  both  diagnose their disease and understand their illness.

Ask your patient to tell the story in their own words. Encourage them to share what is most important to them, with open-ended questions, reflection and summary. Find out how it’s impacting their lives, and what they are hoping for now.

Eliciting a patient’s illness narrative will accomplish three things. First, hearing the story in a patient’s words can be diagnostically useful, painting a clearer and truer picture than the answers to a series of questions. Second, it will provide the context needed to develop a treatment plan. And third, simply telling one’s story can be therapeutic. Even as a first-year student, you can contribute to your patients’ healing simply by listening.

Patient Voices : The experience of illness

In this New York Times series, different patients with the same disease describe their unique experiences of illness, sharing the impact of disorders like Parkinson’s, ALS, or sickle cell anemia. The complete collection is available at the link below. You may need a subscription to view more than a few per month.

Here, we include stories of people living with bipolar disorder. The introduction says “Riding the ups and downs of bipolar disorder can cause havoc for those living with the disorder and their loved ones. Here are firsthand accounts of those living with bipolar disorder.”

Listen with intention to at least two of these stories. How are they similar? How are they different? How would hearing them help you to care for the whole person?

As you listen, think about:

• Who is this patient?
• How does this patient experience this illness?
• What are the patient’s ideas about the cause of the illness?
• What are the patient’s feelings about the illness?
• If applicable, what does the patient want from their healthcare now?

Reference & resources

Street RL, Makoul G et al (2009). How does communication heal? Pathways linking clinician-patient communication to health outcomes. Patient Education and Counseling. 74(3):295-301  LINK

Patient Voices – The New York Times (nytimes.com)

The Foundations of Clinical Medicine Copyright © by Karen McDonough. All Rights Reserved.

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Illness Narratives And Its Impact

• Category Health
• Subcategory Disease
• Topic Illness

Illness narratives are the views of people on illness and the effects on their lives. They can be written or oral. Those narratives aim at establishing the order of the illness experience as the events unfold i.e. The onset, diagnosis and treatment. They express the difference the changed relationship between body, self and society which such experience invariably entails. Patient’s views have generally been regarded as ambiguous in current biomedicine. Specialists have been slanted to treat the reports of their patients with significant distrust. The clinical look of the clinical profession was concentrated on the internal substantial universe of the patients. How patients spoke about their illness, indications and problems was viewed as best as a vague reflection of the language of the organs and tissues and pathological changes (Armstrong 1984). But, specialists needed to depend on these reports so as to explore and analyze the disease. This distrustful attitude was used by social scientists in their investigations of the social reality of biomedicine and sickness. At the point when such investigations were first started, the bio-clinical definition and origination of diseases established the natural starting point. The patient’s perspectives and activities were connected to this conception by methods for terms like ‘disease conduct’ or ‘lay-point of view’. when a distinction was made between illness and disease the possibility opened up for the opened up for the study of the patient’s speech acts as an integral and important part of the course of the illness. Afterwards, the focus of consideration moved from the disease to the going with and its transformation in diverse social contexts, the foundation was laid for conceiving the patient’s speech acts as a voice that was strong enough to stand up against the voice of medicine

One of our most remarkable forms of explaining suffering and experiences related to suffering is the narrative. Patients’ stories give voice to the suffering that lies outside the area of the biomedical voice. This is presumably one of the principle purposes behind the developing stories among social researchers occupied with examine on biomedicine, illness and suffering.

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Narratives in Social and Medical Science

The expanding reference to stories in social scientific investigations of medicine and disease is a specific example of the increasing enthusiasm for narratives now being shown by sociology. A discussion that emerged of late, especially among philosophers, has concerned the has concerned the possibility and value of grand theories and grand narratives A number of authors have called to attention that the ancient theories, the hypotheses of Marx and Marxism to give a model, are not ready to formulate and express understanding and information in the modern world. This development is paralleled in the field of medical studies by doubts about the possibility of biomedicine to explain and cure ills and relieve suffering.

Philosophers Taylor (1989) and MacIntyre (1982), and others like them, contend that we make outlines for comprehension and judgment and link them to the regular conditions of our lives. The narrative’s significance is being one of the fundamental forms through which we perceive, experience and judge our actions and the course and value of our lives. The stories people tell about illnesses are of very much importance because the give an insight to the subjective experience. They are also an image representation of the people telling them. They exert enormous power on how we run our lives, how we deal with pain, what we can relate to the illness and what we disown.

Narratives have become very crucial players in the study of chronic diseases as a way of understanding how patients deal with the daily life situations. According to Bury (1982), chronic illness is viewed as a disruption of a person’s normal life hence also affecting their identity. The illness affects the relationship between the patient’s body, self and surrounding world. It is therefore important to restructure the life of a chronically ill patient. Listening to the patient’s side of the story makes it possible to see the life events that have been changed by the illness. Directing attention to the suffering, Kleinman, in a book that he authored the Illness Narratives (1988), has given the narrative concept a wider definition. He claims that the narrative is the way in which patients give a voice to their suffering. In the 1990s a number of writers including Frank (1995) have shown how narratives not only articulate suffering but also give the sufferer a voice for articulating the illness experience apart from how illnesses are conceived and represented by biomedicine.

The increasing theoretical significance of the narrative concept in the field of illness research is a reflection of the change and expansion of the illness concept towards a greater emphasis on suffering as a starting point in social scientific studies of illness. This makes it easy to study the patient‘s illness experience and illness world as asocial reality apart from the conception and definition of illness as formulated by biomedicine

Narratives and Illness

Any type of illness causes a disruption in the normal life. Illness may change the perceptions of what can be changed and we may also be forced to change where or how we live. Acute illness, most of the times causes a temporary change in our lives. It involves a transitory and limited disruption. Acute illnesses may cause a patient to reexamine their lives in the view of their own frailty. Unlike acute illnesses, chronic illness, change everything about a patient’s life, their life foundation because the illness creates new and qualitatively different life conditions. From this we can conclude that all types of illnesses affect ones basic life either permanently or temporarily. The experience of continuity and inner coherence is called into question and perhaps becoming invalid. Illness can be experienced as an external event that has invaded normal life process. Initially, the illness may lack all connection with earlier events, hence it discrediting our sense of temporal continuity. It is in this Narratives offer an opportunity to combine the split ends of time, to construct a new context and to fit the illness disruption into a temporal framework. Narratives can provide a context that involves both the illness event and surrounding life events and recreates a state of interrelatedness.

Defining illness using narratives is a method of viewing illness events and symptoms by combining them with a biographical context. By incorporating illness events into a patient’s personal life, physical symptoms are transformed into aspects of a patient’s life, diagnosis and prognosis. This can be referred to as customizing of the illness experience. Illness narratives enable other people to comment and give suggestions on the illness. Thus, narratives serve as a platform for presenting, discussing and negotiating illness and how we relate to the illness. Using narratives, it is possible to articulate the various events and discuss what they mean.

Types of Illness Narratives

In the first case, narrator, illness and narrative are combined in one person. The illness experience is expressed through a narration that explains the illness occurrence and how it affects a person’s life. This narrative resembles personal experience narratives. It narrates events that have been experienced personally and cause problems to the individual. The narrative helps solve problems for the patient and is a way of solving challenges caused by the illness. The patient is the narrator. In the second case, the narrative is about the illness. It shows knowledge and ideas about an illness. An example of this situation is where doctors and healthcare professionals talk about a patient’s illness. The narrative plays a central role in medicine because it is a means of conveying passing on clinical information.

The third illness narrative is where there is insufficient information on a narrative. For example when a patient is suffering from a brain injury, it is difficult for them to use the patient illness narrative to explain how they feel.

Other types of illness include the restitution, quest and chaos narratives. Restitution narratives are where there is expectations that the sufferer will get healthy again. Chaos narratives are where the sufferer thinks that they will get better. While quest narratives are those which involve the sufferer offering help and being a tool of transformation to themselves and others suffering from the disease.

In conclusion, it is evident that illness narratives accomplish the following:

• The narrative construction of an illness world; the narrative provides a platform which we can predict symptoms, disruptions that illnesses cause and rearranging symptoms in the order that they occur.
• The narrative reconstruction of life history; chronic illness cause the sufferer to face psychological and moral issues. They are forced to revise their personal identity and life history.
• The narrative explanation and understanding of illness; illness narratives build upon cultural ideas about the causes of illness.
• Use of the narrative as a strategic device; illness narratives can be used to explain the cause of certain behaviors. Riesman (1989, 1990) explains how people in the process of divorce excuse it by blaming an illness.
• Transforming individual experience into collective experience; eg in hiv/aids, some of the patients  

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A Narrative Approach to Healing Chronic Illness

Many clinicians may feel poorly prepared to manage patient suffering resulting from the travails of chronic illness. This essay explores the thesis that chronically and terminally ill patients can be holistically healed by transcending the suffering occasioned by the degradations of their illnesses. Suffering is conveyed as a story and clinicians can encourage healing by co-constructing patients’ illness stories. By addressing the inevitable existential conflicts uncovered in patients’ narratives and helping them edit their stories to promote acceptance and meaning, suffering can be transcended. This requires that clinicians be skilled in narrative medicine and open to engaging the patient’s existential concerns. By helping patients transcend their suffering, clinicians claim their heritage as healers.

EXPLORING SUFFERING

Relieving suffering is the ancient goal, warrant for authority, test of adequacy, and ethical core of medicine. 1 Fundamental to medicine’s meaning and purpose, the relief of suffering should arguably be the foundation for medical decision making. Yet, modern medicine often fails to relieve suffering and, at times, can paradoxically exacerbate it through its curative focus, therapeutic activism, and a service delivery system poorly designed to meet the needs of chronically ill patients. 2 , 3 In a robust quest to cure disease and extend life, attention to suffering has fallen by the wayside.

The contemporary discussion of suffering entered medical literature late in the 20th century. In 1982, Cassell explored suffering in an article in the New England Journal of Medicine . 4 He later observed that, despite a widely referenced publication in an influential medical journal plus other articles and a book addressing the subject, 5 – 7 little had changed in medicine’s response to suffering. 8 Cassell attributed this to beliefs that understanding and managing suffering is intuitive, and to the training and practice focus on disease management rather than on the ill person.

More recently, Epstein and Back noted that clinical care rarely addresses suffering and recommended 2 management approaches to relieve it. The first, diagnosing and treating disease to remove the source of suffering, remains paramount in medical efforts to alleviate suffering. The second, “turning toward” suffering, involves being open to the patient’s experience so to enter the patient’s world. 9 (p2623) By so doing, clinicians can help patients to refocus and reclaim important, meaningful, and generative aspects of their lives that foster growth through connection, transcendence, and healing. “Turning towards” broadens the focus of medical service delivery to include the patient’s illness experience and suffering in management decisions. 10

The travails of chronic illness exacerbate patient suffering. Given many clinicians may feel inadequately prepared to deal with the medical needs of chronically ill patients, 11 , 12 it is likely even fewer feel prepared to help them relieve their suffering. 13 Alleviating suffering requires that clinicians understand, identify, prevent, relieve, or manage it. 14 Patients can be supported through the degradations of chronic and terminal illness by a thoughtful exploration of their suffering. Suffering is conveyed as a story which inevitably involves the existential aspects of a patient’s life. Clinicians skilled in the nuances of narrative medicine can help patients edit their stories, which often involves engaging patients on levels relatively uninformed by medical education. Along the way, patients may be guided to find holistic healing.

THE NATURE OF SUFFERING

There is no commonly held definition of suffering. 15 , 16 Cassell defined it as “the state of severe distress associated with events that threaten the intactness of the person.” 4 (p640) Other definitions include: “an aversive emotional experience characterized by the perception of personal distress that is generated by adverse factors undermining the quality of life” 17 (p57) ; “an individual’s experience of threat to self, a meaning given to events such as pain or loss” 18 (p5) ; “perceived damage to the integrity of the self” 19 (p2233) ; and “a syndrome of some duration, unique to the individual, involving a perceived relentless threat to one or more essential human values creating certain initially ominous beliefs and a range of related feelings”. 14 (p11) Taken together, one might conclude that suffering is personal and individual, is related to threats to the integrity of self, and is experienced by the whole person, not just the body.

There is greater consensus concerning the dynamics of suffering. Suffering involves “dissolution, alienation, loss of personal identity and/or a sense of meaninglessness.” 20 (p717) While physical pain can cause suffering, suffering can arise separate from physical pain, and some people with pain do not particularly suffer because of it. 4 , 19 Suffering ranges in intensity from distress 4 , 14 , 18 to misery, anguish, and agony. 14 It pertains to the meaning ascribed to events and inevitably entails existential and spiritual elements. 16 “The more we suffer,” maintained Elisabeth Kubler-Ross, “the earlier the spiritual quadrant opens and matures.” 21 (p108) Such “deep suffering” is a transformative experience in which identity is challenged and changed to forever alter the life and relationships of the sufferer. 16 (p23)

Yet suffering remains an integral part of human experience, for life entails suffering—the first of Buddha’s Four Noble Truths. We suffer when we don’t have what we want or have what we don’t want. 22 Suffering prods us towards a more nuanced understanding of our place in the universe in the same way that physical pain warns us to avoid destructive activities. 23 The individual, anecdotal nature of suffering, suffused with perception and meaning, is relayed as a narrative. 24 To understand the sufferer, one must understand the narrative, for it is through story that the patient’s suffering is accessed. 25 This means both hearing the illness story and listening for the suffering narrative therein.

ILLNESS NARRATIVES AND SUFFERING

Illness stories can take many forms—restitution, tragedy, quest, chaos. 26 Restitution stories entail a recovery narrative, the happy-ending-triumph-over-adversity-story generally preferred in Western culture. 27 , 28 In these narratives, transformations in the face of illness mirror the structure of mythic hero stories: separation from the world as known, isolation and change, and return to the world transformed to teach lessons of life renewed. 29 The basic structure of illness stories involves the onset of, adjustment to, and struggle to incorporate illness into identity. 30 “The experience of illness is always the experience of both ‘having’ and ‘being had’,” observed multiple sclerosis patient Kay Toombs. “I not only ‘have’ the illness, it also ‘has’ me.” 31 (p99)

Other illness stories portend no happy ending. 32 Stories of tragedy rescind possibilities for restitution; stories of quest present an unfolding metamorphosis with no end in sight; and stories of chaos depict a shattered, disorganized experience. Difficult to tell and hear, these tales reveal the embarrassment, shame, and guilt 33 accompanying the radical loss of self-esteem wrought by disability. 34 , 35 Central to the illness story is a threat to the assumption of personal indestructibility. 31 These are tales that have been “wrecked,” as the narrative of the present does not represent what the past was supposed to lead up to and the story of the future is fearful to behold. 27 (p55) “My history is no longer smooth and linear,” wrote a paralyzed Robert Murphy, “but bisected and polarized. And my long-range future does not really exist.” 35 (p26)

Some patients confront an inability to verbalize their experience. 32 They may be rendered mute by their suffering, 36 unable to express their experience as they withdraw deeply into themselves. 5 Others may struggle to find words to express their suffering. 26 “Language supplies us with ways to express ever subtler levels of meaning,” noted Lucy Grealy, disfigured by cancer of the jaw, “but does that imply language gives meaning, or robs us of it when we are at a loss to name things?” 37 (p44) When voiced, telling the story of suffering helps a patient gain perspective, reconnect with the world, and forge a new identity. 27

To determine if patients are suffering, we need to explore their experience. A number of questions have been found useful towards this end ( Table 1 ). The goal is to engage the patient in a dialogue that kindles insights that cannot be individually attained. 41 Promoting dialogue requires mutual respect, the ability to perceive the flow of meaning, the suspension of assumptions, and the skill to know what needs to be said when to help patients observe their thinking. 42 Such interaction is crucial, for through dialogue patients can reflect on their stories and find their way to healing.

Questions to Explore Suffering

WHAT IS HOLISTIC HEALING?

A review of definitions of holistic healing reveals a variety of characteristics of the phenomenon. Healing involves cure or recovery from disease and the removal of impediments to and restoration of function. 11 , 43 , 44 It engenders a sense of personal harmony, well-being, balance, and peace beyond bodily integrity. 31 , 43 Healing accompanies the experience of transcending suffering, 42 which is perhaps the most inclusive of these characteristics. Transcending suffering arguably results in harmony, well-being, balance, and peace, but is independent of restoration of function and recovery from or cure of disease. It therefore remains a viable option for chronically and terminally ill patients. 45 , 46 Indeed, preserving personal integrity, restoring well-being, maintaining function, and preventing and transcending suffering are the treatment goals for the chronically ill patient. 7 , 8 , 11 , 45 , 46

Because illness begets suffering which is shared as a narrative of existential crisis, holistic healing involves addressing and resolving that existential predicament. 46 “Existential” can relate to existence, the meaning of existence, or striving to find concrete personal meaning in existence. 47 (p100) As serious illness thrusts patients into questions concerning the meaning of life, the holistic healer attends to the dynamics of existential disease just as biomedicine addresses the mechanics of physical disease. 48 Existential predicaments commonly relate to death, gaining perspective on freedom, isolation, and meaninglessness 49 and are reflected in the timeless themes associated with suffering.

Isolation, hopelessness, helplessness/vulnerability, and loss accompany a growing awareness of the disintegration of self, values and belief systems, and daily connections to the world. 50 These themes may be discerned by the attentive listener of patients’ stories and reflect the patients’ sense of fragmented identity. At the least, the patient may share those aspects of life which can no longer be taken for granted. 51 Fragmentation of identity is an opportunity to explore patients’ suffering to affirm their experience, foster a therapeutic alliance, and establish a context from which their suffering may be transcended.

Suffering can be transcended through acceptance 52 , 53 and investiture with meaning. 54 Identity is formed through meaningful attachments to life. Severing or losing these attachments disrupts the sense of personal integrity and precipitates suffering. 24 , 55 Accepting the change without pursuing reattachment or rejecting the loss can result in the transcendence of suffering. 52 , 53 Palliative care specialist Ira Byock observed that sufferers found relief when they “surrendered who they were to a new reality of who they are.” 56 (p13) Toombs would agree: “Achieving harmony in the face of illness means learning to live with bodily disorder as a permanent way of being.” 31 (p102) By relinquishing the desire for things to be different and accepting a new reality and identity, suffering can be transcended.

Suffering arises as a crisis of meaning, 57 when previous meaning structures no longer apply to life, 17 and is transcended “the moment it finds a meaning.” 47 (p113) Meaning is “richly alive and powerful” and may be found in work or dedication to a cause, through love or relationships, or through the attitude one takes towards unavoidable suffering. 47 , 58 (p474) “Whether (and in what way) illness causes suffering,” Toombs asserted, “depends upon the whole texture of meanings and values intrinsic to a particular patient’s unique life narrative.” 46 (p228) Frankl maintained that meaning allows humans to endure and survive the direst situations. He fondly quoted Neitzsche: “He who has a why to live for can bear almost any how .” 47 (p104) The patient with chronic illness inevitably confronts the question, “Why me?” 35 Healers help patients find a “why” to transcend their suffering.

For McWhinney, healers recognize and acknowledge suffering, appreciate the meaning of the illness for the patient, are present when needed, and provide hope. “To be a healer,” he noted, “is to help patients find their own way through the ordeal of their illness to a new wholeness.” 59 (p95) This requires compassion, conversation, and the ability to help patients find hope. 20 , 38 , 60 Healers empathically witness suffering, compassionately engage patients, and possess proficiency in narrative medicine.

Narrative medicine is to the management of suffering as biomedicine is to the management of disease. It is medicine practiced with the narrative skills of “recognizing, absorbing, interpreting, and being moved by the stories of illness.” 61 (p4) Narrative competence entails knowing “what to do with stories.” 62 (p1,265) It begins by first listening for the story of suffering, a skill subtly more acute than listening to illness stories. 63 Telling the story of suffering helps patients to reconstruct their painful past and gain distance on their suffering, receive affirmation of their search for a new identity, and find a language of interpretation that helps them transcend their suffering. 39 Hearing and affirming a story of suffering aids holistic healing, and clinicians can play an important healing role by helping patients construct their illness narratives. 64

Attentive listening discerns the form or general theme of the story, uncovers the sources of suffering therein, and hints at the possibilities for editing the story. In the process, a new understanding of self that reinstates or preserves personal integrity may be generated. 53 Because suffering arises from a threat to the integrity of the intactness of an individual, the healing narrative is a story of fragmentation of identity, contemplation of ensuing suffering, and transcendence through acceptance and meaning. 65

A MATTER OF WORDS

I have argued that suffering is managed by helping patients edit their illness stories to gain acceptance of and find meaning in their circumstances so to transcend their suffering. Thus, prostate cancer patient Anatole Broyard described doctors as storytellers who “can turn our lives into good or bad stories, regardless of the diagnosis” 66 (p53) and avowed that “any meaning of illness is better than none.” 66 (p65) Yet, clinicians might resist this role, and the mention of suffering is rarely heard in clinical encounters. 67 Principal barriers are training, temperament, and time.

Many clinicians may not feel prepared for such work. Medical training teaches little about suffering, 9 , 13 devalues illness narratives, 68 promotes reifying patients’ stories to medically pertinent facts, 69 and guides clinical conversations through drop-down lists in an electronic medical record (EMR). There is no item for “suffering” on an EMR drop-down list. Moreover, the nature of suffering thwarts research paradigms valued by biomedicine, 70 so no evidence-based guidelines exist for managing suffering. Suffering can arise from any aspect of a person’s life, and clinicians may feel uncomfortable discussing non-biomedical issues. They may perceive that existential and metaphysical aspects of a patient’s life are beyond their expertise, or simply do not see this as their role. Medical training focuses on the fixable, so clinicians may avoid problems for which they have no answer or cure.

Witnessing suffering can be painful. Some clinicians might fear a loss of emotional control 71 that could compromise diagnostic clarity, or wish to avoid the “psychic numbness” that can accompany exposure to suffering. 72 (p51) Clinicians must distinguish and cope with both their and their patient’s feelings about the disease in the context of the patient’s life, 46 , 73 so as to not respond to their sense of helplessness with a hyper-or hypo-engagement 74 that impedes dialogue. But by engaging the patient in dialogue, the clinician can act as interpreter, arbiter, and advisor to enable patients to clarify their situations and make necessary decisions or adjustments. 46 Interestingly, it is these non-technical, humanistic activities that some clinicians have found the most fulfilling and affirming of their work. 74 , 54

Some clinicians may be concerned they do not have time to address suffering. But not all patients will be suffering, and unexpected psychosocial concerns emerge only every sixth to seventh consultation in primary care. 76 When explored, conversations that satisfy patients last only 3 to 7 minutes. 77 A longer dialogue suggests that the patient is struggling and needs re-appointment for further dialogue. More importantly, we remember critical events not sequentially but transformationally, defined by their life-changing nature. “Personal unity shatters vividly at the moment one receives a definitive diagnosis of incurable illness,” observed Toombs. “In that instant, one recognizes that nothing will ever be (or can ever be) the same again.” 31 (p99) So also, healing can occur in an instant. “And then I experienced a moment of the freedom I’d been practicing for. …” Grealy noted. “As a child, I had expected my liberation to come from getting a new face to put on, but now I saw it came from shedding something, shedding my image.” 37 (p222) Through the power of continuity, a series of brief but connected dialogues can lead to profound transformation and healing.

Care must be taken to avoid imposing expectations for healing that lead vulnerable patients to feel they have failed for not obtaining a sense of transcendence. 9 Since only the patient can find the acceptance or meaning in their illness story that leads to transcendence, the patient does the healing. The clinician helps by offering a relationship that encourages and affirms the search. “Healing is a gift,” observed Dame Cicely Saunders, “and I don’t think you are there to demand it. I think you do the caring that you can and you hope healing will come.” 21 (p101) The clinician-healer is less a problem-solver and more an accompanier on the healing journey. 10

Any approach to healing that claims universal success should be held with suspicion. A narrative approach may well fail to bring relief to patients or families undergoing chaos and tragedy. Time and circumstance may not allow reconstruction of the patient’s story to effect healing before calamity occurs. Catastrophic disease presentations such as a stroke that renders a patient comatose, can preclude dialogue. The chilling specter of cognitive decline foreshadowed in the word “dementia” warns both patient and clinician that time for editing illness stories is waning. In these cases, clinicians can encourage an active life review with an explicit effort to reconcile old wounds, suggest expressions of appreciation and affection, and actively engage the family to create positive memories. 78 Confronting suffering that cannot be alleviated, clinicians can humbly and respectfully attempt to “soften” it. 16 (p3)

In the final analysis, what patients bring to their clinicians is their stories. When fortunate, these can be interpreted biomedically, and treatment leads to a cure, restoring health and potentially relieving suffering. But when patients become chronically or terminally ill, despite the best evidence-based approaches to managing their diseases, suffering is exacerbated and holistic healing becomes a treatment goal. Herein, clinicians can play instrumental roles by addressing the existential concerns of their patients and acting as guides who help them transcend suffering. 79 , 80 In so doing, clinicians are never without something to offer their patients as they assume the mantle of their heritage as healers and connect with the meaning of their work.

Conflict of interest: author reports none.

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Medical Humanities and Illness Narratives

This is a chapter I wrote for a collection on American Creative Nonfiction, edited by Jay Ellis. It's an overview of the fields of medical humanities and illness (and disability) narratives.

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Perspectives in Medical Humanities publishes peer reviewed scholarship produced or reviewed under the auspices of the University of California Medical Humanities Consortium, a multi-campus collaborative of faculty, students, and trainees in the humanities, medicine, and health sciences. Our series invites scholars from the humanities and health care professions to share narratives and analysis on health, healing, and the contexts of our beliefs and practices that impact biomedical inquiry.

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This paper aims to (re)ignite debate about the role of narrative in the medical humanities. It begins with a critical review of the ways in which narrative has been mobilised by humanities and social science scholars to understand the experience of health and illness. I highlight seven dangers or blind spots in the dominant medical humanities approach to narrative, including the frequently unexamined assumption that all human beings are ‘naturally narrative’. I then explore this assumption further through an analysis of philosopher Galen Strawson's influential article ‘Against Narrativity’. Strawson rejects the descriptive claim that “human beings typically see or live or experience their lives as a narrative” and the normative claim that “a richly Narrative outlook is essential to a well-lived life, to true or full personhood”. His work has been taken up across a range of disciplines, but its implications in the context of health and illness have not yet been sufficiently discussed. This article argues that ‘Against Narrativity’ can and should stimulate robust debate within the medical humanities regarding the limits of narrative, and concludes by discussing a range of possibilities for venturing ‘beyond narrative’.

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Narrative psychology is concerned with the stories we tell each other about the events in our lives. Though careful analysis of these narrative accounts we can deepen our understanding of the experience of illness. This chapter considers the character of the narrator, the structure of the narrative and the context within which they are told. Portuguese translation (Narrativas sobre doenças e o corpo) published in O Adoecer (On Becoming Sick) edited by Julieta Quayle (2019) Rio de Janiero: Editora dos Editores.

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Illness Narratives in Practice: Potentials and Challenges of Using Narratives in Health-related Contexts

Professor of Social Medicine and Epidemiology

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Illness narratives, patients’ stories about their experiences of illness, have gained a reputation as a scientific domain in medicine in the last thirty years. Patients’ stories about living with an illness, diagnostic procedures and treatments, encounters with medical institutions and its impact on their private and social life have been considered as an important access to their meaning-making and coping endeavours. They also play an important role in doctor-patient communication and the development of a healing relationship. This book aims at sensitizing professionals who use illness narratives in the field of medicine for their problems, challenges, and chances. In what ways should scholars of narratives respond to such uses? We argue that the use of narratives in applied contexts raises many questions about what kind of tools they are and what epistemological foundations, communicational properties and pragmatic effects they comprise when they are shifted from research material to clinical or educational and instructive instruments in various domains. This raises ethical concern and reflections. The book brings together scholars from various disciplines across clinical and theoretical fields. They give impressive examples how illness narratives can be used in many practical domains, and reflect on the chances as well as on the methodological or epistemological assumptions and challenges which are inevitably connected with the use of narratives as clinical, educational, or informative tools.

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How did Robin Williams Commit Suicide

This essay about the tragic suicide of Robin Williams sheds light on the complexities of mental health and the silent struggles individuals face, even in the spotlight of fame. It discusses Williams’ battle with depression, anxiety, and addiction, leading to his untimely death by hanging in 2014. By emphasizing the importance of recognizing signs of mental illness, destigmatizing discussions around it, and providing support without judgment, the essay aims to honor Williams’ memory and prevent similar tragedies. It serves as a poignant reminder of the human toll of mental health issues and the need for open dialogue and compassion in addressing them.

How it works

Robin Williams, the beloved actor and comedian, tragically took his own life on August 11, 2014, leaving the world in shock and mourning. His death shed light on the complexities of mental health and the silent struggles that many individuals face behind the curtain of fame. While the news of his suicide stunned his fans, understanding the circumstances surrounding his death can help raise awareness and promote conversations about mental health.

Williams struggled with depression and anxiety for much of his life, which he openly discussed in various interviews.

Despite his outwardly jovial demeanor, he battled inner demons that ultimately led to his untimely demise. The exact method he used to end his life was by hanging himself in his home in Paradise Cay, California. This tragic event underscored the importance of recognizing the signs of depression and providing support to those in need.

It’s essential to acknowledge that suicide is a complex and multifaceted issue, often stemming from a combination of factors including mental illness, substance abuse, and life circumstances. In the case of Robin Williams, his struggles with addiction further exacerbated his mental health challenges. Although he sought treatment and sobriety throughout his life, the weight of his inner turmoil proved overwhelming.

The loss of Robin Williams serves as a poignant reminder of the importance of destigmatizing mental illness and providing accessible resources for those in need. Despite his fame and success, Williams grappled with feelings of inadequacy and despair, highlighting the fact that mental health does not discriminate based on external factors. By openly discussing mental health issues and offering support without judgment, we can honor Williams’ memory and prevent similar tragedies from occurring in the future.

Using a narrative style, this essay provides insight into the tragic circumstances surrounding the death of Robin Williams. By delving into his struggles with mental health and addiction, it emphasizes the importance of raising awareness and promoting open dialogue about these issues. The essay aims to humanize the discussion surrounding suicide and encourage compassion and understanding for those who are suffering.

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How Did Robin Williams Commit Suicide. (2024, Apr 14). Retrieved from https://papersowl.com/examples/how-did-robin-williams-commit-suicide/

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"How Did Robin Williams Commit Suicide," PapersOwl.com , 14-Apr-2024. [Online]. Available: https://papersowl.com/examples/how-did-robin-williams-commit-suicide/. [Accessed: 15-Apr-2024]

PapersOwl.com. (2024). How Did Robin Williams Commit Suicide . [Online]. Available at: https://papersowl.com/examples/how-did-robin-williams-commit-suicide/ [Accessed: 15-Apr-2024]

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