Personalized Narratives: Patients Create their Own Metaphors for Their Own Disease
“Listen, are we still going to keep fighting this thing, or are we just going to change the nature of the fight and the nature of the battle?” The minute the words came out, I realized that that was not what I wanted to say.
Every person is different. This idea is at the core of personalized medicine, a field of healthcare that takes into consideration each person’s individuality; their general health, environment, and their genetic disposition. This analysis of the individual leads to precise diagnostic treatments and specific therapies — treatments that are as individual as the patient is. This new trend seems to be working—the survival rates for many cancer patients are on the rise. Before some of these targeted therapies, people with chronic myelogenous leukemia (CML), for example, could expect a 31% survival rate. That rate of survival has climbed to 89%. Something is clearly working.
However, the treatment of the psychological experience of having potentially fatal diseases has not enjoyed a similar renaissance. Since Nixon’s “War on Cancer” in the 70’s, we have continued to use a militaristic metaphor for having cancer. It is a fight. We are soldiers. We have lost the battle. This metaphor for thinking about disease works for some but not others. For some, it is a source of strength, but for other’s it does not fit their life view, their religion, their personal source of strength. For some, they are losing the battle and thus they are failing. Although I have not been able to find any evidence, and this is pure conjecture, it is possible that this kind of language also reflects a male psychology.
But what if we applied this concept of individualized medicine to creating individualized narratives for people? What if, as part of their treatment, we give every patient the opportunity to create a metaphor for their disease that works for them? A simple conversation could be had; one that was designed to understand the life theories of the individual patient. What does a good day look like to them? What is their favorite food? What leisure time activity gives them the most pleasure? What is their belief system? During times of stress, what strategies do they use? What kinds of music gives them strength? For some people, they would prefer no metaphor at all. Cancer is just cancer. Their body is just their body doing what it does, with cells that divide and sometimes divide uncontrollably. But we should give them the choice of how they want to think about it and how their doctors can talk about it with them. We should at least give them this measure of control, encouraging them to create their own language around their own situation.
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