To be a person is to have a story to tell. —Isak Dinesen
It’s hard enough that a diagnosis comes along to threaten our lives—does it also have to threaten our life stories? One of the things I have heard many patients speak about is how their diagnosis resulted in what felt like an identity crisis. One patient put words to her experience when she told me, “Every day you wake up and your whole sense of self has changed whether you want it to or not…you have to think of yourself as different…”
The Reverend Steven Spidell, a chaplain at M.D. Anderson Cancer Center (Houston, TX) and facilitator of the class Healing Stories says; “People, are narrative based. In the process of becoming patients, people often lose their stories… With chaos and disruption, they begin to tell the doctor’s version of their story, the medical version, not their own. They need to find meaning, make sense out of their disease.”
This new story can have positive effects. Rich, one of five patients who appear in the video portion of our Difficult Conversations Toolkit tells us, “No question you are going be in shock, depressed and so forth. And once the dust settles you have to ask yourself, ‘Okay, now what do I want to do with the rest of my life?’ ”
Asking ourselves Rich’s question can prompt us to change our priorities, forge new friendships, revisit old ones, take a trip we’ve been putting off or quit a job we’ve always disliked. The question can be an opportunity to minimize our regrets. Yet this question can also weigh heavily on us. We spend a lifetime creating an identity, figuring out what is meaningful to us, and just like that we become the “person who is a patient.” Are we no longer an individual but defined by data in the medical record.
What if we were prescribed the pen—asked by healthcare providers to put our thoughts and experiences of illness on to the page? What would you say? Does the label of patient replace the old story of oneself or does the new story influence the way you think? Reverend Spidell believes patients need to find meaning and make sense of the disease, which may not work for everyone. Perhaps, by exploring ones experience it can lead to a better understanding of the impact of illness on one’s life. We only need an opening line.