Transforming Personal, Relationship and Systemic Narratives as a Consequence of an Unanticipated Diagnosis
Abstract: This paper presents preliminary findings from a pilot study of how an unanticipated serious health diagnosis is engaged as a disorienting dilemma. Through the lens of transformative leaning theory we explore the generative possibilities of transforming one’s personal, relationship and systemic narratives.
“The phone call rang just as I was preparing for my class. I answered it recognizing the phone number of my doctor. ‘The results show an invasive tumor. I would like you to come and see me on Monday so we can discuss alternatives.’ I turned to finish setting up – knowing that my life was about to take an unknowable turn.'”
The moment of diagnosis is a turn in the life narrative of the person who suddenly becomes the patient. But our narratives are formed in relationships. The disorienting dilemma that is sparked by the diagnostic test or the visit to the doctor or to the hospital is one that can open a crisis as well as an opportunity. Where it falls on the continuum is, to some extent, influenced by how we take the opportunity to reshape our narratives of ourselves, of each other and of our relationships (Young-Eisendrath, 2009, Folkman & Greer, 2000)
Transformative learning is a process prompted by disorienting dilemmas, or experiences that disrupt our personal narrative – how we know ourselves. Through critical reflection, reflective discourse, and action (Merriam & Caffarella, 1999), we are able to reframe our subjective interpretations. Our personal and relational narratives, and create new insights or alternate ways of viewing the world. Yet our narratives are continuously being shaped and reshaped in our ongoing engagements with ourselves and with our significant others. How the way we are known is reflected back through the eyes and words other others may be consequential to how we know ourselves. Significant others include not just family and friends, but our medical providers as well. A mutuality of engagement in the communicative process that follows a medical diagnosis facilitates not only an exchange of information, but the potential for mutual recognition and personal transformation; the ability to acknowledge the changes to an individual’s self-story by virtue of engaging with the story of another (Brendel, 2009).
This paper, prepared for the Transformative Learning Conference in Athens Greece 2011, presents some of our preliminary reflections from a pilot study of how a health crisis or a shift in one’s health narrative can be an opportunity for personal, relationship and systemic narratives. We hope to follow-up on this pilot study and build on this narrative study beyond the conference with people who have experienced an unanticipated diagnosis and their significant others.
Review of the Literature
An unanticipated shift in one’s health narrative can be considered a trauma or, at the very least, a psychosocial transition. How one addresses the aftermath of such a trauma can create a mixture of negative and positive experiences. The ability to grieve and gradually accept trauma as a change in one’s narrative presents the possibility of growth. The invitation to compose one’s narratives provides an opportunity to assume a sense of agency in what might otherwise feel out of one’s control. The term “psychosocial transition” was used by Parkes (1971) to describe situations where major life events prompted a restructuring of individuals’ ways of looking at and plans for living in the world. He argued that such restructuring could yield both positive and negative outcomes.
Scholarly interest in post-traumatic growth began to gain considerable strength in the 1990’s, based on the idea that greater interest should be placed on studying people who are actually healthy, and the better and brighter aspects of human behavior [Tedeshi, R.G., & Calhoun, L.G., 2004] Many researchers use the term “Posttraumatic Growth” (PTG) to refer to the potential of stressful experiences to yield positive life changes (Calhoun & Tedeschi, 2004; Tedeschi & Calhoun, 1995). There are six correlates of posttraumatic that are commonly studied: sociodemographic factors, characteristics of the stressor, personality attributes, social context, coping processes, and indicators of physical and psychological health (Stanton et al., 2006). Earlier research suggested that a substantial proportion of trauma survivors report at least some positive changes arising from their struggle with the aftermath of trauma (Calhoun & Tedeschi, 2001; Tedeschi & Calhoun, 1995). Based on a comprehensive review of the literature from 1960 through 2004, Stanton, et al. (2006) concluded that the two factors showing the most consistency as correlates with posttraumatic growth were the perceived impact of the stressor (high threat) and an intentional engagement with the stressor.
Composing one’s story about the changes that have occurred, and how one is living forward as a consequence can offer the opportunity to notice and to choose ones path forward and how one engages with others. More specifically, our relationships help create our narratives. These narratives of trauma and survival are important in post-traumatic growth as they help survivors to confront questions of meaning and how answers to those questions can be reconstructed McAdams, D.P., (1993). In a recent study of the learning process related to a diagnosis of breast cancer in women, Hogan found that while people typically experience posttraumatic growth after a health crisis in areas such as personal relationships, appreciation for life, personal resources, spirituality and life priorities, changes occur in adaptation to specific parts of a person’s life or worldview that is challenged because of her traumatic event (Hogan,
Some common positive outcomes of significant stressful life events are more genuine personal relationships, a greater appreciation of life, greater personal strength and resources, improved spirituality and more authentic life priorities and goals (Cordova et al., 2001; Stanton, Bower, & Low, 2006; Tedeschi & Calhoun, 1995).
Pilot Study
Our selection criteria for this pilot study included people who were diagnosed with cancer. We selected people diagnosed with cancer, as it is often the case that the diagnosis comes as a surprise and a sudden interruption to an otherwise active life. Ten people were interviewed.
- Tell me about how you find out you had cancer/a medical condition.
- Now, how would you describe yourself before you were diagnosed?
- How would your friends/your most intimate partner describe you?
- And when you found out, what was that experience like for you?
- Some people talk about the experience of … as being life changing. Would you describe your experience?
- In what ways? How do you describe yourself differently?
We see the interview process as not merely uncovering what is already known by a person. Rather, the interview process itself is constituitive: the questions are an invitation to construct and revise one’s own life narrative and thus one’s experience (Holsteing and Gubrium,
Findings
Drinking wine with you, getting warmer and warmer,
I think why not trade in this overcoat
Made of leaves and dirt.
Then I look out the window.
For what? Both worlds are here.
-Rumi
Open Secret*
- Theme: People described themselves the diagnosis as interrupting a narrative of a busy active life.
- “My life was flat out busy, active, little time for reflection. I was living at warped speed.”
- Theme: People coming out of the woodworks to care – showing up
- “I learned a lot about friendship during that time… the idea of something showing up in that way had been foreign to me.”
Some of my closest friends were completely absent during both my diagnosis treatment and brief aftermath and were scared to death – and there were certain strangers who entered my life and were white knights giving support confidence and shared experiences.”
- Theme: Impact: Gains and losses
- Loss of a fertile future:
“There is not a day that goes by when I don’t remember. I have more of a belief that I have something to share and I have a purpose. I have a very strong sense of what I want to convey to somebody. ”
“You have a window where everything is new to you and then life goes back to normal when you are impatient behind the wheel of the car and go back to kicking the dog. And what is really important is number one during that window to make decisions in those 6 months about how you will be different and commitments before you go back to kicking the dog and honking the horn this cannot be 100% of who you are. You have to remember the new coat you are wearing.”
“It was like rebooting my life. I am more conscious of how I am living my life.”
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Ilene Wasserman
ICW Consulting Group
Victoria J. Marsick
Columbia University, Teacher’s College