Results in Health Stories

The Agency for Clinical Innovation is an Australian organization seeking to promote innovation and implementation of innovation in healthcare. Their site offers a range of resources including narratives, networks, and information. Under the resources tab, they offer five patient stories about managing chronic illness with the stated purpose: “These patient story videos highlight the importance of self-management and coordinated care to support people living with chronic conditions.” One of the featured videos titled “Kay’s Story,” provides an interview of Kay describing her experience and relationship with chronic illness, specifically diabetes, Graves’ Disease, and COPD. These diagnoses led to Kay developing agoraphobia, a fear of leaving one’s home or going outside.  She reached out for help and support through the Aboriginal Medical Service, which provided her with steps to begin building confidence in going out, and self-managing her chronic illness and agoraphobia. The tone of the video is uplifting and positive, and she describes how this support allowed her to overcome her agoraphobia and begin practicing and advocating for self management. Brief stories useful for undergraduates, especially pre-health majors. Also community groups looking for ideas to promote wellness.

In this brief interview, Terrence Ho describes his relationship with his brother Torrance, who was diagnosed with Duchenne muscular dystrophy as a child and passed away at the age of 37.  The interview addresses family relationships, cultural stigma, and Terrence's roles as caregiver and advocate for this brother.  Terrence also describes Torrance's talents as an artist and power wheelchair hockey goalie.  Terrence has advice for other siblings about how to manage family dynamics, emotional stress, and patient advocacy.  The interview reveals what an important role siblings play over time when a child has a degenerative condition, and also speaks to the difficulty parents may have in talking to children about their brother’s or sister’s disabilities. There are several mentions of types of health care and services that were provided or that would have been useful.

This brief story provides insight into challenges and rewards of the sibling relationship, one that is often overlooked.  It could be used to prompt discussions about family caregiving, family communication, and ways health care providers can support family caregivers.

"Case Report" document's the author's simultaneous experiences of being a medical student and sexual assault survivor. It moves through the aftermath of the trauma living solidly in two worlds, as an insider and outsider of healthcare.

This brief story describes numerous interactions with a range of health care providers, as well as interactions that occur with friends, a pharmacist, patients, and others.  By showing examples of unhelpful and helpful ways people responded to a sexual assault survivor, this story can prompt important discussions about compassionate care and social support.  It also provides insight into how a provider's own traumatic experiences inform their approach to medical care.  Some of the interactions in the story are difficult to read so advance notice may be appropriate with some audiences.

Abraham Verghese is a bestselling novelist (Cutting for Stone; The Covenant of Water) and this memoir is written with elegance as deep as his medical expertise as an internist. The story of his close relationship with a medical student whose life unravels through addiction gives profound insight  into physicians who struggle with addiction (like anyone else, but also quite differently). His role as a teacher and mentor for medical students gives an up close view of what medical education can be: sensitive and humane, without denying how much physicians must learn under often-stressful conditions. Pre-health professions students, medical students and graduate health humanities courses committed to reading the whole book would find much to discuss about both those issues. I used Chapter 11, an extended examination of and conversation with a patient, hospitalized for various complications of being both a heroin addict and unhoused, to talk through humanistic approaches to medical care with undergraduates.

Anna Dovre's story "Body of Work" is a meditation on the various ways she has encountered death through her medical education: learning to intubate on a cadaver, witnessing death in the emergency department, sitting with a hospice patient.  Her essay reflects on the ways death is experienced and understood in the process of medical education and the connections and disconnections with one's own understanding of mortality.

She starts her reflection with a description of her practice time in a cadaver lab and the physical benchmarks for competency when performing an autopsy. The following section about her time as a hospice companion juxtaposes personal experience with a discussion of clinical terms for ways and stages of dying.  "To die actively means the pauses between breaths lengthen and stutter; the mind slips into unconsciousness; the skin begins to mottle into starbursts of purple and blue. To die inactively—well, that becomes a question of semantics, of philosophy."

The story raises questions about how we honor life and make one's last moments and after death a respectful and respected process. How can we, as the living, be more appreciative of the gift of life while caring for those around us? This quotation, "If anything, the scene on the table has become more gruesome, but perhaps that has rendered her less real, less human to me," from after the autopsy is a stark realization that will inspire feelings and emotions in readers.

This song expresses the desire to discover that a diagnosis of cancer is not real, to "wake up" from the experience and emotions of approaching and fighting illness to discover it's been a nightmare, rather than one's new reality.  The song is from the musical, Club Meds, which tells the stories of three people affected by cancer and by each other.

Songs can be powerful tools for teaching by providing emotional resonance, perspective, and connection to a topic that can otherwise feel isolating or clinical. Lyrical stories engage emotions in ways that data or factual information alone often cannot. In "Wake Up," pace, rhythm, and repetition convey feelings of wanting to deny or resist a diagnosis yet being forced to come to terms with it.

Stories of illness told in song can also allow individuals to connect with themes of mortality and end-of-life on a personal level, creating empathy for the fear or stigma associated with these topics. This can be especially beneficial in communities where discussing mortality is a cultural taboo. Mortality-themed lyrical stories can normalize discussions around death and dying. In a community setting, they can facilitate support groups or workshops where people feel safe to discuss these topics openly. In clinics, they can make patients and families feel more comfortable asking questions or expressing concerns about end-of-life care options. For both patients and families, lyrical stories about mortality can provide solace and a way to process grief. They serve as a form of art therapy, encouraging reflection and emotional release, which can be healing during or after the grieving process.

Witnessing his father's decline from cancer, an oncologist wrestles with his own fears and desperation. The story illustrates what happens when roles are flipped and a health professional finds himself at the centre of a family health crisis.  What would you, as a health professional, do when faced with a similar situation?

The story could be used to promt discussion about care at end of life and provider-patient communication.

This personal essay, appearing in JAMA's regular "A Piece of My Mind" feature, details a health care provider Cia Merin Bishop's experience of going through unsuccessful infertility treatment while practicing medicine and caring for patients in a pediatric intensive care unit.  The essay poignantly portrays the emotional experience of undergoing infertility treatment. It also speaks to what it is like to be both physician and patient and the coping, support, and resilience she marshalls in order to continue to function at work while dealing with the physical and emotional impact of her own medical treatment.  The author points out that this experience is not uncommon, citing studies that suggest about a quarter of female physicians experience infertility and 31% of female oncologists reported infertility requiring counseling or treatment. As she says, "I write this piece in solidarity with other women physicians. I write this piece as an anthem of our strength. And I write this piece to acknowledge the suffering within us, as we tend to the suffering around us."

The dual focus of this moving and readable essay would make it equally useful for discussions of infertility and reproductive health as well as physician stress and resilience.  It could also be a useful in a course or unit on narrative medicine as an example of how physician's writing their own stories helps to humanize medicine.

Together Well is an online collection of stories (some audio and written but most video) about experiences of COVID.  This collaboration between the Relational Leadership Institute (www.relatelab.org) and the Northwest Narrative Medicine Collaborative (nwnmcollaborative.org) was designed to "collectively make sense of the pandemic’s impact on all members of the community: nurses, social workers, patients, family members, doctors, caregivers, students, chaplains, scholars, educators, activists, and artists." In addition, the stories were assembled in the hope that reflecting on pandemic experiences can provide a basis for change in healthcare and communities that "better center connection, relationships, and well-being."  Stories document not only hardship but also ways that the COVID crisis led teams, communities, and individuals to  innovate, collaborate, and change in powerful ways that we may wish to continue as we move forward.

The 37 stories in the collection are listed on the webpage; each has a thumbnail and an image.  There is also a video (the first entry in the collection) about the project.  Stories are brief enough to show in a class or workshop.  The videos are hosted on YouTube so it is possible to provide closed captioning and transcripts are also available.

Skin & Bones is Renée Watson’s novel about the experiences of Lena, a 40-year-old African American woman in predominantly white Portland, Oregon.  Health, body image, weight, diet, and beauty standards are prominent topics throughout the book and these are contextualized within larger themes about race, gender, gentrification, work, love, faith, and friendship.  There are many passages in the book that show how beliefs about health are communicated through interactions with Lena’s friends, family, romantic partners, co-workers, and service providers. For example, the book opens with a chapter entitled, “the weight I carry,” that problematizes assumptions about health and weight in an interaction with a healthcare provider. Lena’s observations about the interaction (e.g., the too-small gown, unfounded assumptions and problematic statements from the health care provider) are woven with reflections on her lifeworld.  Immediately following this chapter is a brief reflection on “morbid” as a word used in relation to weight; it concludes with the statements, “Comment on my appearance. But tell yourself it’s about my health.”

Health-related themes are prominent enough that one might assign the entire book and this would provide opportunities to see "big" or "fat" as an identity that intersects with race and gender and to discuss health themes in relation to sex, social support, family, and community.  However, the book is also written in chapters (some only a paragraph long) that could be excerpted to explore specific topics.  For example:

• the aforementioned “the weight I carry” and “morbid” focus on a health care interaction
• “Sunday supper” includes a reference to a mother who died from a failure to diagnose breast cancer because she was “a poor Black woman”
• “shopping while fat” and “back to school shopping” address finding plus-sized clothing
• “macro microaggressions” details lunch with younger white co-workers and concludes with the line, “...they sat there and basically admitted—in my presence—that of all the cares and worries to have in life, their greatest fear is having a body that looks like mine.”
• “aunt Aretha” examines “soul food” and its complicated connections to health, family, race, and class
• A sequence of chapters--“fat girl, dance,” “how whiteness killed the body positive movement” (an excerpt from Kelsey Miller), “debriefing,” “positivity,” “positive,” and “body positivy” address how fat acceptance intersects with race and this is taken up later in two chapters describing Lena and her friends’ experience at a “Fat Girl Wellness Conference”

One especially powerful recurring storyline involves messages about self-acceptance, health, and diet that Lena received from her own mother and what she communicates with her daughter. These are difficult chapters and include a near overdose on diet pills that is initially taken as a suicide attempt. A strong bond between Lena, her mother, and her daughter sustains them and the book addresses the complexities of communicating about health, race, gender, and beauty in our personal relationships.

Almeyda considers suicide through internal dialogue that evokes the struggle to weigh life-sustaining alternatives against death. His contemplation turns surreal in an encounter with the idea that "time heals everything" and the possibility to sleep for 100 years. Theme throughout the story is that even in the darkest moments, there are options and opportunities to overcome life's challenges. The final twist, with the reappearance of a key character, emphasizes that love and human connection can overcome even the most desperate times, making clear that suicide is not reasonable or desirable. 10 pages, upper intermediate readers; Argentinian dialect. Useful for a Latin American literature course.

Describes a woman’s experience with two bouts of undiagnosed postpartum depression. She explains her  thoughts and experiences of feeling unable to take care of her children and how these were largely ignored by health professionals.  Story is framed with Q&A about postpartum depression: symptoms, frequency, treatment, etc. Acessible, magazine-style 10 minute read, intermediate and native speakers; good discussion starter for a community group.

This story describes the pain of a mother who gave up a foster daughter, Coco. A year later, she adopted a baby boy, and described this grief to the social worker, noticing that having language to describe the specific loss - "duelo por falta de derechos," - 'grief because you have no rights (to keep the child)' - helped the family move on. 10 minute read, upper intermediate level.

The author found out at age 12 that her mother had a sister who was institutionalized before age 2 with intellectual disabilities that left her unable to speak. She traces her aunt's life through various institutions, most of them deplorable, and hears her mother's grief over the separation from her only sibling. She contrasts the attitudes and treatment of such disabilities in the 1950's through the 1980's with much more open acceptance and inclusion of nonverbal persons in the 2020's, based on a photo that went viral on Twitter. Detailed memoir of three generations' relationships with the sister: the author's grandmother, her mother, and herself. Traces the evolution of attitudes toward intellectual disabilities in the 20th and 21st centuries from close relationship to the issue, noting that children born today with her aunt's condition are able to live much fuller lives because of greater inclusion in educational, social and family contexts. Includes many links to relevant sources, from memoir to scientific works. About 15 pages; also has audio version.

Three page first person account of a woman's drug addiction. It touches on cultural aspects:  "I'm 28 years old, have never had a real job and I and live at home with my parents and five siblings, which might be part of why I've never had much freedom or agency." She descends a long way and then is saved by faith in God. Although not compelling for undergraduates, this might do well in a community group setting because it humanizes the addict.

Pediatrician Vidya Bhavani Viswanathan describes learning to communicate with her autistic son by changing her own expectations about what constitutes "communication" and how we can connect with one another without words.  Her essay details the course of her son's loss of language at age 3, and her own struggle to come to terms with this.  She writes, "I am a writer, and for me his loss of verbal language was so crushing because words were my primary currency of existing. The way I understood the world was through words, and the way I explained it was through words."  Gradually, however, she learns "how to achieve connection without words" and she gives an eloquent list of examples: "Shared enjoyment of something he was interested in; cuddles and tickles that lead to a fit of giggles; city walks with moments of pause to quietly smile his dazzling smile at the crunchy leaves on the ground, the touch of a rough brick wall, the screech of tires, and the wail of an ambulance."  The story also includes information about treatments, screenings, therapies, and assistive technology, yet the emphasis is not on "fixing" her son, but on ruling out possible medical causes for his loss of language and then learning to appreciate how he communicates and how she can enter and appreciate his world.

The essay could prompt a discussion about autism acceptance, and the importance of presuming that autistic children can connect and communicate when provided with accommodations and supports.  It also encourages an appreciation of autistic perspectives and challenges deficit-based stereotypes.

Donna Lambers, a maternal/fetal medicine specialist, describes the impact on her medical practice and sense of self when her vocal cords are affected by a thyroidectomy for thyroid cancer.  She loses the ability to control vocal inflection. "For instance," she writes, "I’m unable to raise my voice at the end of a question... I can no longer tease or kid or be sarcastic with my family and friends, because it comes off sounding mean. My voice, having lost its cadences, is unpleasant to hear; and now, when giving perinatal counseling to my patients, I have no way to convey the empathy and emotion I feel for them..."  She describes with great insight the many ways this has affected her interactions with patients, their families, and co-workers, as well as the frustrations she experiences.

The story could open up a discussion about the ways in which effective communication requires more than simply clear transmission of information and the taken-for-granted ways that we construct relationships and enact identities through subtle cues.  It also speaks to the challenges of this particular non-visible disability.