Tag: patient narrative

Wake Up

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.

Crip Camp

“Crip Camp” is a Netflix documentary produced by Barack and Michelle Obama that traces the origins of the US Disability rights movement to a summer camp for disabled youth called Camp Jened. The film showcases the strong bonds formed at this unique camp that provided a place for self-discovery, authenticity, mutual support, and connection for disabled teens living in a predominantly able-bodied world. The film then follows a group of camp alumni who went on to become advocates for disability rights, putting political pressure on both state and federal authorities. Their tireless efforts eventually led to the passage of the historic Americans with Disabilities Act in 1990. Camper and staff member’s personal narratives are woven throughout the film, personalizing disability in a way that calls viewers to question stereotypes about disabled people, thus functioning as a tool for education and advocacy in and of itself. These stories, often heartfelt and humorous, touch on everything from personal relationships, sex lives, employment, and hierarchy within the disabled community itself. The documentary runs for 1 hour and 42 minutes and combines footage from the camp’s heyday in the 70s with present-day interviews with the attendees.

This film could be relevant to classes on healthcare, disability studies, public health, or social justice to facilitate discussion about physical disabilities, advocacy and activism, healthcare policy, or intersectionality. The film could raise questions about the role personal narratives play in shaping public perceptions of disability and health, who counts as “all” when we think about “access for all,” and what patient-centered care can actually look like, as exemplified by the individuals at Camp Jened.

Dying to be Competent

“Dying to be Competent” details Cottam’s experience with healthcare discrepancies in her experience giving birth attributed to the fact that she’s a woman of color. Cottom describes having her physical pain be completely dismissed by healthcare professionals and claims that this resulted in the tragic consequence of her daughter dying shortly after birth. Through her personal story, Cottom illustrates the inequalities within healthcare due to structural racism, and the grave lack of care women of color too often receive. This essay could be used in classes to further investigate the structural forces within our society and how they are subsequently intertwined with healthcare as well as how it creates marginalization and lack of care within the healthcare system. Additionally it could be used to discuss the role of unconscious biases and stereotypes within the medical field.

Personal Stories of Mental Health

Black Dog Institute is a nonprofit organization dedicated to medical research related to mental health. This online collection houses 18 different stories related to mental health (including bipolar disorder, PTSD, anxiety, depression), each representing the lived experiences of those who wrote them. Each story has a short description. A majority of the stories are from patient perspectives while some of them are based around a provider narrative. Since the themes throughout the stories vary so much, this site could be utilized in any syllabus focused on mental health. Such stories show the personalizing of diagnoses as well as show variability in how they are experienced, which can help to expand the general notions and stereotypes that are held around mental health

A Body, Undone: Living on After Great Pain

“A Body, Undone” is a memoir by Christina Crosby, an English professor chronicling her life after a paralyzing cycling accident in 2003. A respected English professor at Wesleyan University, Crosby explores the physical and emotional pain of her disability through a critical feminist and queer thinking lens. She puts into words the experience of life in a broken body that seems beyond the reach of language and understanding, discussing how we construct a livable life in the midst of unimaginable pain. She situates her personal narrative within the broader social critiques of care labor and the financial burden of disability and injury within the current economic systems and structures in the US. The novel would be relevant to disability studies and feminist theory, but its prose that is rooted in humanity and the events of daily life function to make it accessible to a general audience . This book is a patient narrative that challenges the dominant discourse of disability, and could be relevant to discussions about disability, pain, and care and its intersections with gender, sexuality, and class.

Health Stories Project

Health Stories Project has an online presence in multiple platforms, including this website as well as Youtube, Facebook, and Twitter. Patients are invited to tell their stories in response to a variety of prompts. The site includes a large, searchable collection of stories about a wide variety of conditions and experiences. The stated purpose of the site is “to give people opportunities to share their personal health experiences and to learn from the experiences of others.” Digging into the privacy policies reveals that information provided can be used for targeted advertising and the site is owned by HPG, LLC, which is described on an assets data management site as “a provider of patient engagement services to pharmaceutical and biotechnology businesses through managed patient and caregiver networks in a variety of therapeutic areas.”

The site is a source of stories, but may be more important for prompting discussion about informed consent and how patient stories are used, as well as how to weigh the benefits of being able to share one’s story (and read stories by others) with the other uses to which these stories may be put. The site states openly at the outset that they are not a non-profit and it doesn’t hide these multiple purposes (nor is it difficult to track down the connection to HPG, LLC); however, they don’t lead with this, either.

Real Life Stories- Diabetes.co.uk

The diabetes.co.uk Real-life Stories page features a collection of personal narratives from individuals sharing their experiences living with diabetes. These stories provide insights into the challenges, triumphs, and daily lives of people managing both type 1 and type 2 diabetes. Contributors from diverse backgrounds and perspectives share valuable information about their diabetes, offering support and inspiration to others facing similar circumstances. The page serves as a platform for fostering a sense of community and understanding among those affected by diabetes, while also promoting awareness and education about the condition. This page could be used in a class for students of healthcare looking to discuss the impact of community engagement and narratives in medicine. Classes could discuss the differences between type 1 and type 2 diabetes, analyzing how each is represented differently in the media and by those who have it. Below are two summaries of patient stories. The site could also prompt discussion about the role of narratives in coping and social support, and the potential (and limitations) of storysharing on a website such as this.

Scot Lester, a member of the Diabetes Forum, shares his diabetes journey, beginning with his diagnosis in May 2012 due to extreme fatigue and thrush on his tongue. Despite lacking classic symptoms, a subsequent HbA1C test revealed he was a type 2 diabetic. Scot adopted a very low-carb/high-fat diet and embraced a proactive approach to monitoring his blood glucose levels. Alongside this, Scot has a 4-year-old son, and both of his parents, who died, had diabetes. He quickly saw positive results, and with his doctor’s approval, he reduced his medication intake. Ignoring advice from healthcare professionals, Scot continued following the guidance from the Diabetes Forum community, achieving remarkable success. After just over three months, his HbA1c dropped to 5.5%, surprising his nurse. He also experienced improvements in cholesterol levels. Encouraged by his progress, Scot decided to discontinue medication two days after a follow-up appointment, with no adverse effects on his glucose levels. He maintains a routine of exercise and relies on a reliable blood glucose meter. This story serves as inspiration, and he offers advice to others, advocating for a healthy lifestyle and self-cooked meals. He showcases the effectiveness of his personalized approach to diabetes management.

Four years ago, Gillian Peace was diagnosed with type 1 diabetes after experiencing symptoms following a vacation in Thailand. Rapid weight loss prompted a visit to her doctor, leading to the discovery of a blood sugar level of 33. Gillian was hospitalized for three days but faced fears of needles and hospitals. However, she maintained a surprisingly healthy appearance.

Struggling with the idea of multiple daily injections and finger pricks, she gradually learned diabetes management, experiencing fluctuations between hyperglycemia and hypoglycemia. Despite initial challenges, her diabetes stabilized, but her decision to have a baby added new complexities. Throughout pregnancy, Gillian managed tight blood sugar control with increased insulin needs and frequent injections. After giving birth via cesarean section at 36 weeks, she faced the “dawn phenomenon,” requiring early-morning injections to control rising blood sugars. Eventually, she was able to transition to an insulin pump, finding it to be a positive change that provided more freedom. Connecting with other diabetic mothers during pregnancy led to the formation of a support group, including Type 1, Type 2, and gestational diabetic mothers. This community offered her valuable support and insights, including guidance with her insulin pump. Gillian expresses gratitude for the community she has found through diabetes.

These stories, and many others represent the variety of experiences that exist with diabetes, shedding light on the importance of diabetes narratives.

When Breath Becomes Air

“When Breath Becomes Air” is a memoir by Paul Kalanithi, a neurosurgeon who was diagnosed with stage IV lung cancer at the age of 36. The book is a reflection on life, death, and the intersection of medicine and humanity.

The narrative unfolds in two parts. In the first part, Kalanithi shares his journey from being a promising neurosurgeon and scientist to grappling with the reality of his own mortality. He goes into his passion for literature and philosophy, and how these interests shape his perspective on life and death. The second part of the book is written by Kalanithi’s wife, Lucy Kalanithi, after his death. It provides insight into the last months of his life, his battle with cancer, and the emotional and existential challenges faced by both Paul and his loved ones. Throughout the memoir, Kalanithi explores questions about the meaning of life and the purpose of medicine. He provides the experiences of both the doctor and the patient, offering a unique and intimate perspective on illness and the medical profession.

“When Breath Becomes Air” is celebrated for its uniqueness, as it not only captures the intellectual depth of Kalanithi but also the emotional journey of a man coming to terms with his own death. The book has resonated with readers worldwide, sparking conversations about the fragility of life and the importance of finding meaning in the face of inevitable death.

This book could be used in a class that discusses topics of aging, death, and dying or for any class interested in hearing about illness from a provider’s perspective. Students could discuss the differences between a physician and patient narrative, as well as what happens when doctors get sick. It raises questions of medical ethics, as well, as Kalanithi reflects on what he wants in his own death.

Caregiver Stories

The Family Caregiver Alliance’s Caregiver Stories web page is a collection of personal narratives that shed light on the diverse experiences of individuals providing care to their loved ones. These stories capture the challenges, triumphs, and emotional journeys of caregiving across different situations and relationships. From spouses caring for partners with chronic illnesses to adult children looking after aging parents, each story offers a glimpse into the unique and often complex dynamics of being a caregiver. The narratives serve not only as a source of inspiration and empathy for those who might not be caregivers but also as a valuable resource for individuals seeking connection and understanding in their own caregiving journeys. This webpage addresses all different types of illnesses and caregiving dynamics, including Alzheimer’s, diabetes, cancer, autism, and so much more.

While there is no link to submit stories on the website, the stories seem to be provided by community members who are engaged with the family caregiver alliance. While they are urating the stories, there is quite a variety of types of stories, ranging from casual and blog-like to more formal articles. The communal aspect of this page allows the reader to search for what they’re looking for with keywords and categories.

One story provided is from a mother describing how she and her husband have cared for their daughter with complicated type one diabetes. Britani was a once-healthy young woman who, at 22, developed type 1 diabetes. Over the years since then, her health deteriorated, leading to unexplained and debilitating symptoms. Despite numerous visits to various medical institutions, their family was left without a clear diagnosis, and Britani’s condition continues to worsen. This narrative portrays the immense challenges faced by Britani’s caregivers, her parents, who juggle the responsibilities of caring for her while trying to maintain a life outside her health concerns. The toll on both Britani and her caregivers is evident, with hospitalizations, experimental treatments, and the constant struggle against physical and emotional pain. The story also touches on the financial strain, as the caregivers cannot afford to stay home full time and must continue working. Despite the hardships, their new granddaughter brings joy to their lives, too. Throughout peritoneal dialysis insulin shots, bathing, trouble sleeping, and more, Britani remains remarkably strong, facing each day with minimal complaints despite the unimaginable pain she endures. The caregivers express a deep love and willingness to sacrifice for Britani, highlighting the profound impact of chronic illness on both the patient and those who care for them.

Another story example is that of Lisa and her husband Richard. Their life, initially filled with love, family, and what Lisa describes as “vibrant Italian passion,” took a drastic turn in 1998 when Richard’s behavior and health began to change. Despite numerous attempts to find a diagnosis and solution, it wasn’t until a CT scan revealed the extent of Richard’s condition—his brain was shrinking, and a large mass was present. The couple faced the harsh reality of Early-Onset Alzheimer’s, and began attending classes and finding support from the Family Caregiver Alliance. The challenges escalated when their home caught fire, leading to the heartbreaking decision to place Richard in a facility dedicated to Alzheimer’s care. Lisa’s account is a raw and emotional portrayal of the toll this devastating disease took on their relationship and family. Richard’s passing eight months later left a profound void, and Lisa, in coping with overwhelming grief, turned to cooking as a form of self-care. Her book, “Good Grief Cooking,” is a resource she provides for those facing similar loss. Through her story, Lisa emphasizes the importance of seeking support, sharing experiences with other caregivers, and finding ways to navigate the complexities of grief.

The stories provided in the Caregiver Stories are a great resource for those who are currently caregivers to their loved ones, either looking to share their stories or hear stories from others. This website could be used in a classroom setting for students in healthcare looking to understand how to support and understand not just their patients, but the other people taking care of them.

Familia conoce a mujer que recibió corazón de hija con VIH

Shaffrey describes the life of a woman, Brittany Newton, who suffered from a heroin addiction and died when she was 30 years old. She was also HIV-positive–for many years, doctors have transplanted organs from one HIV-positive person to another. This happened in the case of Brittany’s donated heart, and Brittany’s family was able to hear her heart beating in Maria’s, the transplant recipient’s, chest. 5 minute read, appropriate for upper intermediate Spanish learners.