I guess the answer to that question depends on whether you are asking about understanding mental disease or mental illness. Just to clarify: Disease is a diagnostic term used to classify a pathological condition. Illness is more contextual. An illness is the subjective experience that arises from living with a disease. There are many published accounts of illness narratives written by people who live with a disease, but I don’t believe I have ever heard of a disease narrative. So back to the question: How well do we understand mental illness?
Through the written word
Tom Ellis, PsyD, ABPP, recognized how noted psychologist Marsha Linehan courageously publicly disclosed her experiences with living with mental illness and suicidality. He called our attention to others in the field who have written eloquently about their own experiences with mental illness, such as Kay Redfield Jamison (An Unquiet Mind) and Norman Endler (Holiday of Darkness).
Many others also have shared their mental illness experiences,including Pulitzer Prize-winning author William Styron (Darkness Visible: A Memoir of Madness), poet Sylvia Plath (The Bell Jar), actress Brooke Shields (Down Came the Rain), attorney Terry Wise (Waking Up: Choosing to Die, Deciding to Live) and writers Joanne Greenberg (pen name, Hannah Green) (I Never Promised You a Rose Garden) and Julie Hersh (Struck by Living), to name a few.
David Lovelace (Scattershot: My Bipolar Family), Michael Greenberg (Hurry Down Sunshine), Patrick Tracey (Stalking Irish Madness: Searching for the Roots of My Family’s Schizophrenia) and Christopher Lucas (Blue Genes: A Memoir of Loss and Survival) have given us views into families’ experiences with mental illness.
Through the arts
This is merely a partial listing of mental illness narratives. There are also many other genres that are readily available to help us understand the experience of living with mental illness. Who has not gazed upon a Van Gough self-portrait and not recognized distress and known it in a slightly new way? The photographer Michael Nye (Fine Line: Mental Health: Mental Illness) has given us a photo voice exhibit that profoundly captures the lives of some of the most vulnerable, poor, desolate people with mental illness.
Learning from the arts
The question is: How do we use these media to really understand mental illness? After all, it is in understanding something that it becomes less taboo, that the stigma is reduced.
I have a couple of ideas about this. First of all, what would happen if medical, nursing, psychology and social work educational programs made understanding the illness experience a core part of the curriculum? Programs that include courses in narrative medicine are aimed at training interdisciplinary clinicians in the art of using patient and family illness narratives to provoke reflection, empathy and compassion in the service of patient-centered care.
Second, what would happen if researchers applied narrative analytic methods to the published illness narratives? Lt. Cmdr. John Fleming, a psychiatric nurse practitioner in the U.S. Navy, and his colleagues conducted such a study of Michael Nye’s exhibit. Reports from such studies have the potential to stimulate future research in understanding how to incorporate the patient and family experience into clinical practice.
Next, what would happen if narrative medicine were included as a core component of continuing education programs? Such a development could help enhance the development of the therapeutic alliance by providing an additional lens through which to interpret the patient’s perspective.
Regardless of the approach, the call to patient-centered care is a call to understand the illness experience. I believe in doing so we will be better informed about mental illness.