The Journal Intime
Henri Frederic Amiel

Recently, I was reminded of a patient from time passed who had asked me, “How does one live with uncertainty?”

In The Wounded Story Teller writer and patient Arthur Frank notes, “When a doctor tells us we are sick they are not just diagnosing us—they are initiating a new chapter in the story of our lives. What would it be like for patients to tell their stories and doctors to read them?”

As a medical humanist, who is also a writer, the function of my role was to help facilitate doctor- patient communication by documenting the patient’s perspective of illness–in their own words– for the doctors to review.

I suggested a writing exercise. “Your opening line is ‘how do I live with uncertainty?’”

The patient took pen to hand.

“I started to write about uncertainty when the dark sky outside my bedroom window brightened with a flash of lightning and a lower rumble of thunder could be heard…at a distance…a safe distance…I wanted to enjoy the passing of the storm…It seemed alive to me not threatening…so I opened the curtains and set down with my pen and paper… with the lights out I watched the flash of light…heard the role of thunder and enjoyed the slow ballet of silhouetted branches as they danced in the wind…the presence of uncertainty in my life…prompts me to say “yes” to the call…to use each moment wisely…to make good choices…to say “yes” to life…the dark side is a fear that I will squander my opportunities today because I made a pleasing choice…one that fit my heart and I feel better about the alternatives.”

As a writer I was impressed by such a poetic description of uncertainty. What was her doctor’s response?

I stood at the doctor’s desk as she focused her attention on the page. There was a pause and a sigh before she told me how these words could be helpful in opening a conversation about what she now understood to be the importance of maintaining clarity of mind in considering treatment options.

“As doctors,” she confessed, “We tend to use medical language as an objective cloak—keeping us one step removed from our patients. By raising our awareness about what patients hear and are saying you can help me communicate with greater empathy—and in so doing, gain a deeper insight into my experience as a physician.”

Sadly, I’m hearing talk about how increasing demands and time pressures are leaving physicians feeling disconnected from patients. Perhaps, by patients telling stories of how illness is impacting their lives we can help our doctors connect to the human side of medicine, which was their calling in the first place.