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“One who suffers has something to teach… and thus has something to give.”
Arthur W. Frank, The Wounded Storyteller
Thirty years ago, Arthur Frank published his influential book ‘The Wounded Storyteller: Body, Illness and Ethics.’ Combining his background in sociology with his story of personal illness, he spent his career examining the power of narratives. Frank believed there was meaning in stories of suffering for the patient, the doctor and the wider community. His earlier memoir ‘At the will of the body: Reflections on illness’ described his own experience with heart disease and testicular cancer. ‘The Wounded Storyteller’ explores stories of suffering more broadly, as a collective. It considers common themes in the stories, how they are narrated and what they tell us about the profound experience of illness.
Frank concludes that there are three illness story types, each told in a different way and each revealing how the illness is experienced. The restitution, chaos, and quest narratives are expressions of patients working to make sense of their illness. I initially resisted the idea that patients could be pigeonholed into these groups. It struck me as an oversimplification of complex illness experiences. On reflection, after closely listening to hundreds of additional stories, I realise these narrative types have given me a framework to better understand and respond to patients’ needs.
The restitution narrative
The restitution narrative is the ‘expected’ experience. The one that patients and doctors are most comfortable with. It is simple: I was healthy, I got sick, I am getting treatment, and I will be healthy again. Illness is viewed as a temporary state that can be ‘fixed’ with medicine. Doctors tend to be comfortable with this narrative as it centres them (and modern medicine) as the hero, the healer. The patient is the passive recipient of treatment. One problem with this narrative is the expectation that the illness will be cured without any lasting effects: the patient will be restored to ‘normal.’ This narrative does not leave space for any other outcomes such as uncertainty in diagnosis, lack of management options, toxicity of treatment or incomplete recovery. There is also no possibility of the experience resulting in physical or psychological change or lasting effects. There is recovery and the illness is relegated to the past. The reality is that complete ‘restitution,’ return to the pre-illness physical and psychological state, is impossible for serious illness.
A patient living the restitution narrative may feel overwhelmed with medical tests and treatments and feel that they are lost in the system, ‘just a number,’ or unseen. They may feel there is more emphasis on blood test and imaging results than there is on their own story. They may feel pressure to be a ‘good patient,’ to be grateful and to comply with recommendations. They may feel shame when complications occur when they are not recovering according to expectation. If we recognise this, we can help them navigate the loss of identity that can come with a serious illness, validate their experience and open the door for conversations about what might happen if full ‘restitution’ cannot be achieved.
The chaos narrative
The chaos narrative is a strong contrast to restitution. In the chaos narrative, illness completely disrupts the patient’s life, and they are unable to function or recount their story in a logical manner. The chaos story is impossible to tell and equally impossible to hear. In this story, the events are poorly defined, disconnected and out of sequence. The illness has descended with a force that has shattered every aspect of the patient’s existence and identity. The illness is not viewed as a temporary setback, instead it is raw existential suffering in the moment, without the ability to expect, plan, consider or hope for an end.
Understanding the chaos narrative helped me feel more empathy and less frustration when a patient is unable to explain their symptoms, localise their pain or give a timeline to help the diagnosis. As doctors we naturally respond with our own need to take control and organise the chaos, yet this may not be the best response. The chaos is a sign of being completely overwhelmed and often terrified. We can respond with support and recognition that this is a difficult time and acknowledge that the illness may have devastating effects on other aspects of life such as family, employment, leisure activities and finances. Support for the grief and loss related to illness and simply bearing witness to the suffering may be what is needed.
The quest narrative
The quest narrative expresses illness as a transformational journey — a catalyst for self-discovery. The goal is not to return to the previous state, rather to find meaning in the experience and emerge as a ‘better’ version of oneself. The patient searches for purpose in their suffering, views the experience as life-changing and wants to help others. This may result in connecting with a support group, fundraising, writing or speaking about the experience. The journey is described from the devastating point of diagnosis to acceptance, healing and personal transformation.
Patients on the quest pathway may be looking for explanations for why this has happened to them to find meaning in their illness. These patients tend to be well-informed, drive their treatment and participate fully in decision-making. They may draw on the experiences of others and their own extensive research to feel empowered. Doctors may find these patients challenging as they may attend appointments armed with research and long lists of questions. An understanding of the quest narrative can help us approach these consultations with empathy and patience.
Conclusion
The restitution, chaos and quest narrative types provide a framework for understanding and responding to the stories we hear in our clinics everyday. Frank acknowledges that listening to stories of illness can be as difficult as telling them. As doctors, we may find their anguish confronting and their chaos frustrating. Our role as healers includes bearing witness to the suffering and helping patients make sense of its impact on their lives and sense of self.
“Seriously ill people are wounded not just in body but in voice. They need to become storytellers in order to recover the voices that illness and its treatment often take away. The voice speaks the mind and expresses the spirit, but it is also a physical organ of the body. The mystery of illness stories is their expression of the body: in the silences between works, the tissues speak.”
Professor Meagan Brennan is a GP working in breast medicine and voluntary assisted dying at Westmead Hospital in Sydney. She is a medical educator at the University of Sydney and has interests in narrative medicine and patient experience of illness.
The statements or opinions expressed in this article reflect the views of the authors and do not necessarily represent the official policy of the AMA, the MJA or InSight+ unless so stated.
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