the first-person experience in illness

                                           Sponsored by Ernest Hawkins, PhD

“Once, a young woman came to see me with severe and relentless abdominal pain. She was fidgety, spoke in fragmented speech, seemed clearly to be suffering. She had already seen a gastroenterologist, a gynecologist, and an expert in colitis, all of whom had found no abnormality to account for her symptoms.

Since this was my first meeting with her, I asked as a matter of routine about the health of her family members. Her father, I learned, had died of liver failure. As she spoke of his horrible suffering—his abdomen swollen with fluid, his muscles spent, his mind clouded—she put both her hands, fingertips interlocked, almost protectively, over her own upper abdomen.

I told her that she used the same gesture to discuss her own symptoms as she had to describe her father’s illness. For the first time in the interview, she became still. She looked down at her hands, now in her lap. We were both silent. And then she said, ‘I didn’t know this was about my father.’”

(Rita Charon, Narrative Medicine, 66)

This scenario illustrates a way medical professional’s deep listening to someone’s story of illness as a part of their life as a whole can inform medical care. In this case, Dr. Charon’s sensitivity to further depths of this person’s narrative brought light to a previously unconsidered factor in her patient’s suffering.

Medical treatments are becoming more effective and there are more options for treatment than ever. Of course, medical interventions can save lives, but they can also create an imbalance of focus that favors the skilled application of technology over openness to the whole sick person.  

Often a patient with symptoms associated with a certain disease is hastily classified, with insufficient careful consideration of the first-person, lived experience of the ill person. There is a gap between the professional perspective of the health care provider and that of actual ill people.

Generally speaking, the contemporary medical profession and health care environment adhere to a philosophical tendency sedimented through centuries of tradition to treat all reality as obeying the physical laws of nature, and to consider consciousness only as a secondary phenomenon of the physical body. But to address the whole person assuming the role of “patient,” personal experience must be fully regarded.  

To be clear, this is a critique of general tendencies, not a condemnation of modern medicine in its entirety. Only with broad strokes can we set our contextual bearings within which to situate the illness experience.  Such landmarks are to be established to explicate the need for further clarification of people’s lived experiences of illness rather than to critique and reconfigure the way contemporary medicine approaches disease and health.  Still, a philosophical reflection of medicine—in all its complexity—is crucial to understanding the illness experience. In Enigma of Health, Gadamer articulates this problem of medical science treating human experience like mere data by saying,

"We encounter...the loss of personhood within medical science when the patient is objectified in terms of a mere multiplicity of data. In a clinical investigation all the information about a person is treated as if it could be adequately collated on a card index. If this is done in a correct way, then the relevant data all uniquely apply to the person involved. But the question is nevertheless whether the unique value of the individual is properly recognized in this process." (81)

No matter the amount of methods, data, and knowledge a clinician brings to the encounter, one thing the patient brings that the clinician never does is the first-person experience of the disorder in question. Looking at the particular ways patients live with these ailments can shed light on infirmity and suffering as an essential aspect along the entirety of life.