Type of Submission: Health Story

How and Why Patients Made Long Covid

This article documents the central role of patient narratives in establishing "long haul COVID" as a phenomenon. The article explores how case studies, Tweets with a shared hash tag, and high profile news stories of individual patient experiences challenged conventional medical wisdom during the early period of COVID. The article also acknowledges that power differences in whose stories receive attention played a role in "long haul" being accepted. This is a brief article that could be assigned in conjunction with first-person narratives to explore how patient narratives are related to accepted medical knowledge, research agendas, and public health communication.

2020 was One of the Best Years of My Life

Inêz Mália Sarmento is disabled autistic author who describes how her experience during the pandemic included growth and development. "It helped me understand even more that the world was ready, it just wasn't using its resources the right way, meaning, the world could be accessible for everyone if we wanted it to be. That made me feel a bit resentful. But it also gave me the fuel I needed to keep pushing against the grain." As a result of this access, she finished high school, began college, and made friends. She questions "going back to normal" and reducing these services.

COVID-19 through the Eyes of a Black Medical Student

Shuaibu Ali is a medical student who reflects on how his experiences growing up in an urban environment increased his risk for various health conditions. He makes the case for the importance of personal stories from individuals from historically marginalized groups as a way of personalizing statistics on health disparities and exposing conditions that create them. I have used this essay in an undergraduate narrative medicine practicum class to prompt discussion about the importance of hearing stories from marginalized groups and the power of story to mobilize social change.

Me and Mrs. Dalloway: On Losing my Mother to COVID-19

Spitzer describes caring at a distance for her mother and father with COVID. Her mother dies, and Spitzer (a literary scholar) explains how Virginia Woolf's To the Lighthouse (a book that helped Woolfe come to grips with her own mother's death) takes on new meaning as Spitzer grieves her mother. She explains, "Reading and interpretation are how I deal with overbearing emotion, and they are also the way I am working through this grief and making it mine." She asks, "How to square the collective grief of COVID with the solitary grief of a mother's death and a father's illness?" and here, too, she finds insight in Woolfe's work, Mrs. Dalloway. The essay's concluding section describes interactions in her neighborhood and the process of grieving during social isolation. The essay could be used to discuss different ways of dealing with grief, and some of the common and distinctive features of COVID-related grief. It also points out the value of literature and personal stories in grieving processes.

On Witness and Respair: A Personal Tragedy Followed by a Pandemic

Ward describes losing her 33-year old husband in the early days of COVID when transmission wasn't well understood and treatments were non-existent. The essay opens with a loving tribute to his individual attributes, a useful move to personalize the statistics on COVID deaths. She puts her loss in conversation with the plot of a novel she is writing about an enslaved woman who loses family and with protests in response to the murder of George Floyd. The short essay is accompanied by a 14:27 minute audio reading. This essay could be used in a course to prompt discussion about health disparities in COVID and the connection between those and a larger history of systemic racism. It also gives insight into grief and loss, both individual and communal, and the ways in which story is a way of processing and acting upon it.

Front Lines: Poets & Physicians Document COVID-19

This project paired poets with NYC-area physicians to write poems as a way to provide space within and beyond the creative process for catharsis, shared understanding, and healing. The project started in spring of 2020 as a collaboration between two sisters--poet Elizabeth Fernandez and physician Nicole Fernandez. At the time I accessed this (8/11/22) there were 13 poems by 8 poets, written "for" 8 physicians. The poems (from June and July 2020 and October 2021) capture the experiences and emotions of these front-line health care providers during the early part of the COVID-19 pandemic.

UNCOVID–a 55-word story

This poem by Wald is composed of 55 words describing his experience as a spouse caregiver to a patient with brain cancer. The adjectives were similar to those Wald heard being used to describe the experience of COVID. In a brief afterward, he explains his intention for the poem: "I hope that this story might help readers pause, reflect, remember, and respond to suffering, both covid and 'uncovid,' with compassion for others and for oneself." This short poem and the author's reflection could be useful prompts for a discussion of how COVID experiences are similar to or different from other more "ordinary" or familiar experiences. There is also room here to discuss the ambiguity in poetry and the way it can allow both for multiple individual interpretations and empathy/common ground.

Patients as Teachers Project

The Patients as Teachers program pairs two first year medical students with a patient to learn more about how illness affects a patient's whole life. Students visit patients in their homes or other locations and learn about the impact of illness, patient coping and resilience, and positive and negative interactions with the health care system. The website has an archive of videos students have created about patient experience. For example, a video from 2020 interviews Jason Barup about his experience with clear cell renal carcinoma and also includes an interview with psychologist Michael Hayes, who worked with Barup through his diagnosis and treatment. The storyline puts Barup's illness experience in the broader context of his identify as a runner. The videos could be used to provide examples of patient narratives (they cover a range of medical conditions). They can also prompt reflection on patient-provider communication and interactions with health care systems.

Patient & Family Storytelling: Real People. Real Experiences. Real Impact.

This Alberta Health Services website lists 107 videos from patients and their families. There is a brief description of each video (e.g., the health condition, who tells the story, what larger issue or point the story illustrates). It is possible to search the collection (e.g., for stories related to "cancer"). Some examples of health narratives on this website include: Rose’s Story: Joy and Grief, a look into how healthcare providers can help us navigate tragedy and foster healing. Rose explores the impact and experience of the stillbirth of her son and daughter. (The website includes a content warning.) B’s Story: Learning to B myself, a story about the challenges of occupational stress, gender identity, mental health, and transgender advocacy from a rural context. Jeraldine’s Story: There is Hope, a story of the experiences of an Indigenous woman who experiences the ramifications of intergenerational trauma. This story advocated for Canada to provide culturally appropriate healthcare to indigenous populations. Although produced by a health care system, these videos give more voice to patients and family members than is often the case with these kinds of collections. They are well-produced and many address the experiences of historically under-served and marginalized populations.

Dancing With Broken Bones: Portraits of Death and Dying Among Inner City Poor

Author David Moller makes the case that the dying poor are doubly invisible, shunned for being poor in an affluent society that denies death. "This book is about providing a face and offering a voice to speak on their behalf." It includes stories about homeless and poor individuals and their experiences with end-of-life care (or lack of care). It portrays both their social isolation and suffering and their resilience and humanity. The author retells individuals' stories and these could be excerpted.