Health Story Hub
This five minute video from AMTA music therapy shares Larry’s story, a musician, teacher, father, and husband who lost many functions following a seizure. The video contains an interview with his wife, and board certified music therapist Moreen Bosch, to show how music has helped Larry regain his self-confidence and joy in music. This video could be used to examine the role of arts, specifically music therapy, in the healing process.
This article from The Guardian features six diverse narratives of individuals living with HIV, highlighting the evolution of the HIV/AIDS experience over the past 30 years in Britain. For example, Jonathan, diagnosed during the early epidemic in the 1980s, reflects on living with HIV for over half of his life, explaining how he managed without medication until 1996 and has come to embrace life with HIV through activism. Another example is Jo, diagnosed at 60, who discusses how she navigated the shock of her diagnosis and the perceptions associated with being an older woman with HIV. She’s open about her diagnosis because she wants to change perceptions about people living with HIV.
This article offers students an opportunity to reflect on diverse experiences with the same illness, and brings up topics such as stigma, activism, and media representation of illness and how these change through time.
Rachel Berlin recounts her experiences as a third year medical student on an internal medicine clerkship and the relationship she had with the senior resident who supervised her work, Hassan. The story touches on several themes, including the process of developing competence in diagnosis through practice with patients and interaction with a mentor, and the emotional work of learning to treat patients in a system in which you aren’t always around to learn the outcome of care and in which you don’t always have time to respond as you might wish to patients who face serious diagnoses or who are dying. An element of the story also concerns Hassan’s status as an immigrant far away from his family in an unnamed war-torn country, repeating his residency in order to qualify for a US medical license.
In my course on the role of narrative in medical practice, I teach a week on how medical students are socialized to become physicians and the role of storytelling in medical practice and socialization to medical practice. This brief personal story would be a useful companion piece to some of the anthropological research I teach.
In “To Preserve My Health, I Had to Learn to Truly Do Nothing. It’s Harder Than It Sounds,” Anastasia Chipelski shares a personal journey of navigating the challenges of chronic illness. She does not specify which chronic illness(es) she has, but explores a general experience of needing to ration energy when one’s body doesn’t work how it should. She tells about the ways she struggled before diagnosis, oftentimes just collapsing on the floor after work, and how she manages it now, like propping her arm up while brushing her teeth. She reflects on the necessity of embracing periods of rest and idleness to manage their health effectively. Chipelski explores the difficulty of societal expectations that prioritize constant productivity and the struggle of redefining success in the context of chronic illness. The article provides insight into the author’s experiences and the broader societal attitudes toward rest and wellness in the face of chronic health conditions.
With this, she explains how the world can view sick people as lazy, especially when it is an invisible illness, raising questions about how and why we see illness. She proposes patience and rest for people with chronic illnesses, beginning a conversation of how a community can also be utilized to support those with chronic illnesses.
This could be used in a course interested in exploring disability, chronic illness, and invisible illness. Students could discuss Anastasia’s story, and the importance of reading a casual, first person narrative that does not address one illness in particular, but rather, her individual experience with chronic illness in general. This could be a useful piece to read for people in healthcare or studying healthcare to understand the at home experience of someone with an invisible illness.
This caregiving story explores the challenges faced by the narrator, Dan Harding, when his mother was diagnosed with multiple myeloma, a bone marrow cancer. As the youngest sibling, Dan took on the role of primary caregiver for his two-year-old brother, Ramón, who had non-verbal autism. The narrative explores the complexities of caregiving, his strained relationship with his brother Ramón, and the family dynamics during a time of grief and healing. He describes the initial difficulties in understanding and meeting Ramón’s needs, the rejection faced as the primary caregiver, and the perseverance required to maintain their bond. The story highlights the turning point when he realized the importance of immersing himself in Ramón’s world rather than forcing him into his own. The narrative also delves into the family dynamics, including the denial of Ramón’s father about his son’s condition, leading to conflicts within the family. Different coping styles among family members, clashes, and misunderstandings are discussed, along with the impact of the mother’s health condition on the family dynamics.
The story emphasizes the lack of understanding about mental health within entire families and the prioritization of physical tasks over emotional well-being. It concludes with the acknowledgment that caregiving is a complex journey with both challenging and loving moments and not all aspects can be neatly resolved or glossed over. Dan expresses a realistic perspective on the difficulties of caregiving and emotional healing within a family context.
This story could be used in multiple different settings, like for other caregivers, or in a classroom setting for students or healthcare providers hoping to better understand the experience of caregivers. It provides insight on how an entire family could be supported in the presence of multiple diagnoses, encouraging healthcare providers to help their patient’s families find mental health support as they complete their caregiving duties.
Ashley James has successfully managed type 2 diabetes for 12 years, but her journey started with denial. At 31, she struggled to accept her diagnosis, refusing to take prescribed medication. A wake-up call came when she spoke to a colleague, a nephrologist, who emphasized the potential complications of unmanaged diabetes. Realizing the need for a change, Ashley began working with her primary care doctor. And despite initial challenges, she made small adjustments to her lifestyle, incorporating better nutrition, physical activity, and medication adherence. These changes resulted in weight loss, but also increased her energy, and improved blood sugar levels.
Facing limited access to diabetes self-management education and support (DSMES), Ashley recognized a gap in her community and became a diabetes care and education specialist (DCES). She took her experiences to local churches, leveraging the influence of pastors to address diabetes stigma and misconceptions. Through sharing her story, Ashley helped others at her church accept their diagnoses and understand the benefits of diabetes education.
Ashley’s story emphasizes the importance of accepting the diagnosis early to take proactive steps in managing diabetes. She believes in recognizing individuals beyond their diseases and advocates for listening to their stories to provide meaningful support. Ashley’s journey serves as a push for those struggling with denial.
Ashley’s story could be used in healthcare class settings to spark discussion about the role of narratives and community in managing diabetes. As well, this narrative would be great for a public health class, or pre-ed students, to gain insight on how someone experiences denial when diagnosed, and how they get past that.
“Barry was in his early sixties when he was diagnosed with Alzheimer’s disease. He and his husband, Randy, had recently moved to an idyllic new town on Cape Cod, excited to start a new chapter in their lives. The diagnosis meant that he not only had to give up his job but also his plans for the future. Worried about the loss of awareness of himself and his life that would ultimately come, Barry prepared his will and visited assisted living facilities. Making these decisions now gives him a sense of comfort that he is still in control of his own life.”
This story is pulled from Biogen, a Massachusetts-based biotech company, in their efforts to shed light on individual patient stories. This link takes you to the Biogen website, where you will find both the video interview and transcript. Biogen is not mentioned in this story but could be an interesting discussion point for a class focused on capitalist healthcare in the US. This story illustrates the importance of personal agency and control in a patient’s journey with Alzheimer’s disease and could be helpful in a class focused on narrative healthcare and patient autonomy. Discussions could include medical advertisements, medical autonomy at different stages of life, stereotypic images of who is an Alzheimer patient or caregiver, and privileges that come with having medical autonomy. The video is also interesting as a multi-layered text (for example, if one viewed only the video, it isn’t at all apparent that this is a story about illness, a feature that can prompt discussion about how this contributes to a message about early diagnosis and patient autonomy).
Author and advocate Greg O’Brien shares his journey as a caregiver for his parents, who both had Alzheimer’s disease, as well as someone diagnosed with Alzheimer’s himself (he is also the author of a book, On Pluto: Inside the Mind of Alzheimer’s). In this video (which also includes a transcript), he provides a detailed account of his personal experience with the condition, starting with the fear and anxiety he felt upon noticing the symptoms he initially saw in his parents and the relief experienced upon receiving a formal diagnosis, which allowed him to put a name to the enemy he was facing. As the story progresses, Greg opens up about the progressive nature of Alzheimer’s, where he experiences more frequent withdrawal, anger, and hallucinations. He emphasizes the need to live in the present moment because, with an Alzheimer’s diagnosis, there is no clear future. He discusses his strategies for fighting the disease, which include journaling daily, maintaining a disciplined lifestyle, and staying physically active.
This story can serve as a case study to understand the emotional and psychological challenges faced by individuals dealing with an Alzheimer’s diagnosis. It also addresses questions about agency and coping, and challenges the stereotype that people with dementia are just passive victims.
Laury reflects on her experience as a caregiver for her mother, who passed away from Alzheimer’s disease. She recounts the journey through various stages of the condition, describing the initial use of memory aids, the gradual loss of her mother’s cognitive and physical abilities, and the difficult decision to place her in residential care. Laury’s story also outlines the challenges of saying goodbye to a loved one at the end of a long disease.
This story can be used for a class interested in the social, emotional, and financial impact of long-term disease on both the patient and caregivers/loved ones. This story could also be used to look at death and dying through a personal and empathetic narrative which can lead to discussions about stigma and fears that surround death, especially for those with chronic or terminal illnesses.
Tamara shares her story of seeking an abortion in the state of California shortly after finishing graduate school and starting a new job. Despite being a former pregnancy options counselor and health educator, she faced challenges in accessing abortion care within the university system and encountered stigmatization from protesters outside the clinic as well as from fellow patients. She also experienced complications from the procedure. Her narrative emphasizes the importance of supportive environments during the abortion process as well as the emotional and financial aspects of the experience. She also addresses the impact of restrictive abortion laws, such as those seen in Texas, on individuals seeking timely and safe procedures. In courses focused on reproductive health, women’s studies, or public health, Tamara’s story provides a firsthand account of the difficulties individuals may encounter in accessing abortion care, including navigating legal restrictions and facing societal stigma.