Adverse experiences such as abuse, bereavement, bullying, perceived failure, trauma and illness can leave an indelible imprint on our human psyche that strikes at the core of who we are. Being diagnosed with cancer is one such life-changing experience that is inevitably accompanied by a threat to personhood.
Among people with cancer, personal identity is challenged when the physical, psychological and social consequences of the disease begin to erode a person’s sense of self and her or his ability to present this view of themselves to the world .
One of the main ways in which people adjust to this threat is through telling their story to others, which helps to make sense of illness . Indeed, in the cancer setting, there is credible research to suggest that telling your story – at least in a structured way – may improve pain and overall well being .
Effective storytelling and the role of metaphor
To be effective, however, the story needs to include a high degree of emotional disclosure: cancer survivors whose narratives have lower emotional disclosure continue to experience significantly more pain and lower well being than people with higher emotional disclosure.
Of crucial importance is the role of metaphor, which is a symbolic device to bridge the gap between the cancer experience and conventional medicine
Invariably, learning to live with a cancer diagnosis and the resulting treatment form part of any developing narrative. Living in such a ‘plot’ is fraught with anxiety for the cancer survivor who is caught up in feelings of uncertainty, fear and skepticism regarding the power of medicine to win the ‘battle’ and restore the person’s sense of safety, well being and personhood .
Narrative medicine has evolved to counter this secondary form of suffering, and offers a model for improving health outcomes. Of crucial importance is the role of metaphor, which is a symbolic device used by the cancer survivor and recognized by the astute practitioner to bridge the gap between the cancer experience and its treatment .
The body is a vessel for experience and story
To understand metaphor in the context of healing, it is easiest to think of the body as a vessel through which the stories of our experiences are allowed to emerge. As a vessel, the body ‘contains’ our emotional responses to life experiences that are ‘collected’ or ’embodied’. In this way, our body is not simply flesh and bone, but rather a central character through which we journey from one experience to the next.
To use an example, a person’s disabling experience of cancer-related fatigue is conventionally regarded as a physical symptom. Along with the cancer itself, fatigue is either treated or the person with fatigue must find a way of living with it.
However, in narrative medicine, fatigue has an altogether different meaning when derived from each person’s subjective experience. In the context of 4 people with ‘incurable’ cancer, Lindqvist et al. interpret one meaning of fatigue as a “lived bodily experience of approaching death” . For a client of mine struggling through chemotherapy-related fatigue, the physical experience of fatigue was the embodied expression of a struggle to live as a whole person .
To understand metaphor, it is easiest to think of the body as a vessel through which the stories of our experiences are allowed to emerge
Different ways of understanding metaphor
Although myself and Lindqvist et al. both use metaphor as a way of understanding the embodied experience of a story that involves physical and psychological distress, there are differences based on what we are willing to permit as our conclusions.
“Comprehending fatigue in this way [as a lived bodily experience of approaching death] allows us to understand paradoxes…such as struggling in vain against fatigue, and hoping to overcome fatigue but expecting failure,” Lindqvist et al. write.
But I would argue this is an unnecessarily pessimistic interpretation that further loses its appeal because it lumps together the subjective data of four persons with advanced cancer to arrive at a single conclusion about fatigue. The beauty and potency of a person’s cancer narrative comes not from pooling its data with other similar stories, but from recognizing the symbolic meaning that is unique to each story.
Somatic metaphor is a way of ‘hearing’ what the person with cancer is actually saying, meaning or experiencing in her or his physical symptoms
A further departure from my own thinking comes from the apparent split in which Lindqvist et al. regard the individual. “The paradoxes represent a struggle between body and mind, between bodily experiences and intellectual understanding,” they write.
For my own part, I do not recognize any ‘split’ or ‘connection’ between body and mind. Rather, body and mind are two expressions or co-dependents of a unitary whole or bodymind in which the physical symptoms of disease (body-physical) and the verbal or non-verbal expression of story (mind-mental) say exactly the same thing.
This somatic metaphor is thus a way of ‘hearing’ what the person with cancer is actually saying, meaning or experiencing in her or his physical symptoms. And because we’re now listening to the person, we can begin to help them.
The essences of the cancer experience
Adequate and appropriate care of the person with cancer ought to embrace an unbounded aspect of body, mind, disease and story
Helping a person with cancer to heal through narrative exploration need not be constrained to treating only those secondary or consequential symptoms like fatigue. Such thinking is further evidence of the dualistic or split thinking that gives rise to the idea of separate mind and body compartments.
Rather, adequate and appropriate care of the person with cancer ought to embrace an unbounded aspect of body, mind, disease and story in which the cancer itself is regarded in the same light as the symptoms it creates…in which the person herself or himself is regarded in the same light as the life story she or he presents along with the cancer.
Without breaking the cardinal rule of acknowledging and preserving the symbolic meaning inherent in an individual’s story, there are nevertheless storytelling themes that emerge from survivor narratives. In this way, storytelling not only values the individual who shares her or his story, but also offers education and emotional support to those who hear it.
One study of American Indians and Alaska Natives who were invited to share their stories of living with and surviving cancer identified 12 themes that revealed the essence of their cancer experiences :
- The cancer journey
- Responsibility to self and community
- Getting beyond the diagnosis
- Cancer lessons–cancer gifts
- The strength of our stories
- Being connected
- Prospering through cancer
- Pain is more than a word
- Survival is an attitude
- Spirituality and cancer
- Specific cancer issues
- Understanding our ways
These themes are a reminder to anyone with cancer (and the health care professionals who serve them) to invest time and resources developing a personal narrative (listening to the personal narrative), finding someone who can help to interpret the narrative (understanding the personal narrative), and exploring the personal meaning inherent in the story.
Key message: Taking time to listen to the story, responding to the cultural needs of every person, and honoring the cancer journey are the basic keys to healing the person, the bodymind, the story, the disease.
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