Inspired by St. Joseph Community Benefit Report, Penn State Berks Professor Writes Book from a Patient Perspective
What started as a project for a health communication class at Penn State Berks became the inspiration for a book that gives voice to women suffering from illnesses that cannot be seen.
It was the fall semester of 2015, and Dr. Kesha Morant Williams, associate professor of communication arts and science, was looking for a service learning project for an introductory level class she was teaching.
The class, which was linked to Penn State’s Center for Service Learning and Community Based Research, was tasked with working with a local organization to fill a need, while fulfilling the requirements of the class curriculum.
Working with Julia Nickey, director of patient and organizational engagement at Penn State Health St. Joseph, Williams arranged to have her students write stories for the hospital’s 2015 Community Benefit Report.
The report highlights programs and activities aimed at promoting community health that the hospital sponsors or supports.
“We were trying to figure out what would be a good link to the service learning center, course objectives and the community. After talking with Julia this seemed like a great fit,” Williams said.
The project gave students opportunities to interview people who had benefitted from St. Joseph’s programs or services, and to write their stories. Instead of writing the stories from a medical viewpoint, however, Williams charged students with employing patient-centered communication.
“I told them that their job is to let the voice of the person they interviewed come through,” said Williams, a former newspaper reporter with a deep interest in health issues. “I like to hear the other side of the story. Very rarely do we hear the patient’s perspective.”
Students completed their interviews and wrote their stories, meeting not only patients, but community members from a number of organizations. The Community Benefit Report was deemed a success and distributed throughout Berks County, but it remained in the forefront of William’s mind.
The professor had long thought about writing a book about illnesses that are real, but cannot be seen. She wanted to tell the stories of people suffering from conditions such as ulcerative colitis, fibromyalgia, borderline personality disorder or post-traumatic stress disorder.
While working with her students on St. Joseph’s Community Benefit Report, it became clear to her that the book should be written in the voices of the people it chronicled.
“It made me think how I could create a text that gave women a voice and readers a viewpoint they may not have had,” explained Williams. The result is a book expected to be published later this year by Maryland-based Lexington Books. It includes the stories of 11 women who suffer from serious illnesses that are not visible to others, but are the source of pain, distress and, often, shame. “Some of these women really struggle with guilt and shame as a result of their illness,” Williams said. “Being able to tell their stories in their own voice can be empowering to them.”
Writing from a bio-medical perspective is fine and often necessary, but tends to focus only on physical health, Williams asserted. “It’s a way to address the medical issue, but it doesn’t address the lived experiences of the patient,” she said. “It doesn’t account for mental or emotional or spiritual health.”
Writing from the perspective a patient can help readers understand underlying conditions and circumstances that may be easy to misinterpret. For instance, Williams said, a mother may decide not to take her medicine one day because it causes dizziness and nausea. While it may be clinically unacceptable for her not to take her medicine as directed by her doctor, it is necessary to the woman because her son is pitching in a championship baseball game that she desperately wants to attend.
Women with unseen diseases often are viewed as lazy, or as whiners, while they actually are simply trying their best to cope.
Participants in Williams’ book include nurses, professors, a physician, a research fellow and a graduate student. They are mothers, wives, daughters and friends – all looking for someone to hear their voice. They tell their stories, as edited by Williams, or she writes their stories in their voices.
The result, she said, is powerful. “Hearing the stories of these women moves assumptions and humanizes these conditions,” Williams said. “It lets their voices be heard.”