Illness Narrative and the psychology behind patient stories online

in Patient/Social Media by

(This post was written by Dr. Steph Miaco a clinical psychiatrist from UP-PGH practicing in Dumaguete. I’m crossposting it here, from healthxph.net with her permission)

What is an illness narrative?

According to a common reference (Blackwell), It is mostly thought of as ill person’s narrative about their illnesses and the effect on their lives. Illness narratives can also include the narratives of relatives about the effects the illnesses have had on their relationships with the sick people and their own lives. They often occur as oral narratives in everyday conversations with family, friends and colleagues. They may also appear as written or published biographical or autobiographical accounts of illnesses and pathographies.

They can be seen as written and published accounts of illness, in published biographical and autobiographical formats. These forms help articulate experiences and events that change one’s life and its prerequisites as a result of the illness. With the advent of social media and increased print capacities, it is becoming ever more easier to have one’s story for consumption in to a wider audience.

The medical sociologist, Arthur Frank suggests that ill persons of modern times are more interested in wanting their own sufferings to be recognized as an individual experience. However, this narrative places the individual’s suffering to be placed in an everyday context, quite unlike the medical narratives which reflect the needs of the medical professions.

Illness narratives can exist in many forms, including that of print media, Television, and cinema, however, for the purposes of this #healthxPh discussion, we will limit our discussion to sharing of narratives through social media, an equally daunting avenue.

Illness stories have attracted attention in health care research, as it is an avenue where health care workers and caregivers of patients can “look through the world through the patient’s eyes”. It is an extended view for understanding what the patient’s experiences and struggles are, as well as their finding solutions for their common problems.

Research on the illness narrative has only started in the 1990’s, but is slowly progressing. It’s potential as a major source of information as to how patients process their illness journey and respond correspondingly to their illness, is only starting to be tapped. To illustrate, I would like to bring to light one study on the narrative typologies of patients with neuroendocrine tumors done in Italy (Miconi, et al, 2015). The study used narrative information from 21 letters of patients with Neuroendocrine tumors , whose specific symptoms varied related to disease pathophysiologies and individual characters. On a daily basis, they would be coping with the symptoms of fatigue, flushing, diarrhea, food intolerance restlessness, dyspnea, fluctuations in mood and pain.

Currently, the treatment options are surgery and palliativecare however, despite the fact there there is no cure, the majority of these patients live for many years with more or less problems with the symptoms as well as the side-effects of the medications. This is a rare disease which proved to be a challenge for the patients and the hospital staff.

For the study, they drew upon a book project of 21 letters of patients in different stages of NETs, which aimed to share information about the experiences of the patients and their relatives and how it was to live with this rare illness. The book was grounded on the premise of narrative medicine, and aimed to build empathy (and thus increase understanding) between the physician and the patient, as well as form communities to combat loneliness and isolation.

Frank’s typology was used in the analysis of these narratives, to make sense of the patient’s understanding and making sense of the events in their lives. He presented three different forms that these illness narratives can take, and these are the following:

  1. The restitution narratives show that someone is sick and gets treated, and then gets restored. In these stories, the patient is almost a passive character, who relies on the doctors to get well.
  2. The chaos narratives are more focused on the characteristic that life never gets better and that the “sufferers” are stuck in a neverending complex situation which blocks movement into a more meaningful response to the illness. The patients tend to feel out of control, and because they are plagued by chaotic perceptions, these stories have no structure.
  3. The third type, quest narratives,which come in three types (memoirs, manifestos and automythology), are the more positive types. They convey that the patient with the illness is moving forward. These are narratives where there is some active acceptance of their illness and prognosis, and that they have undergone a personal change, which offered up insight into alternative ways to deal with the illness.

In the study, the patients described various ways of fighting with difficult cancer. of the patients studied, there were two who were close to giving up, and they believed that their illness was a sacrifice which filled them with bitterness because of a believed “stolen future”. They believed that it was hard for them to accept the inconveniences of their illness. One female in the study talked about how her hardest burden was keeping it all inside and having anyone to share her suffering to.

These stories were greatly varied, and their experiences with the illness could not be measured with the usual QOL instruments. However, these narrative examples mirror data from cancer patient’s storytelling in general; that they experience a danger for their future life, that they were fighting a difficult war, and that it was an opportunity for personal growth, which needed to be shared by others.

The study merely added examples and further knowledge to Frank’s narrative typology of how patients handled their cancer experience. This holds interest for us clinicians because it gives us an understanding of how a patient’s experience with their illness might be a critical factor in their lives as long-term patients. Their coping mechanisms are varied, and they will most likely find way to cope with illness.

The study concluded with how they highlighted stories focusing on the patient’s imbalance and chaos during the illness experience because they illuminated the patient’s concrete suffering, which provided the clinician about their emotional, physical and spiritual state. Listening carefully to a patient’s story might be a starting point for them to find their own resources to attain balance. Furthermore, learning from quest stories, it seems possible to move forward to acceptance and to develop a model for a way of living with cancer. Nevertheless, they claimed that they were skeptical about an uncritical use of quest narratives as a model for clinical practice because they might contribute to individualistic and heroic prescriptions for life that other patients might find impossible to achieve. They recommended that they needed to do additional research on how to use the narratives to support the patient.

The study was limited to the patient’s letters, and might have not given as much depth (or amount of data) as an interview study. The letters however, give us a better view of the patient’s character and story in that setting, but do not necessarily apply to the general population, as differences in culture and personalities abound.

However, as a way of seeing possible ways to approach the problems clinically, and correspondingly, to give patients a deeper insight about their struggles, the illness narrative’s importance is paramount. Giving a “face” to a person’s suffering helps us think of new approaches, and thus, possibly more effective methods of care. However, from our experience with patients, a number of questions have come to light.

  • T1 How and why do patients write their illness narratives
  • T2 How do healthcare professionals react to illness narratives in media?
  • T3 Do illness narratives affect are and policies? How can we advise patients about this?

Looking forward to yet another productive interaction on tonight’s #HealthxPh chat! Join us tonight Saturday, April 1 2016,  at 9PM Manila time for another very interesting chat

Dr. Remo-tito Aguilar co-founded #HealthXPh. A board certified orthopedic surgeon, he is Chief of Clinics at General Santos Medical Center and Medical Specialist II Orthopedics at the Southern Philippines Medical Center in Davao City. Dr. Aguilar is a healthcare social media evangelist and writes his medical musings at The Cast & Curious (www.remomd.com).