Health Story Type: Webpage

Power With Anthology: Storytelling for Social Justice

From the website: “POWER WITH is a collection of multimedia stories that uplift the lived experiences and perspectives of community members, patients, and health care workers and trainees. Specifically, POWER WITH spotlights how our experiences with oppressive (or "power over") structures impact us individually, while also demonstrating that we are all connected through a greater shared human project. These stories inspire us to imagine what a system that embraces relationships and collective change (or “power with”) could look like.” As of 10/25/23, some of the examples from the website were as follows: 1. “Ariah Tesema, a pre-med student, shares her journey of pursuing a career in medicine and embracing her multicultural identity. This begins with immigrating from Ethiopia to the United States as a young child and discovering that her multicultural life does not fit neatly into the boxes American society tries to place her in.” 2. “Andrea Morgan, a doctoral student at OHSU, shares her experience moving to Portland from Southern California and her dream to share her love of science with children who come from similar backgrounds.In addition to her studies, Andrea is leading a Racial Equity & Inclusion grant called Black Like Me 360, a project that allows viewers to see and hear in a first-person experience the day-to-day lives of Black Portlanders on campus and in the city in an art installation.” 3. “As a college student, Toren Ikea-Mario helped his father through a difficult cancer diagnosis and treatment. In the process, he realized that the healthcare system was broken, especially for people like his father, and was determined to be a part of the solution.”

Family Caregiver Alliance – 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. One story provided is from two parents’ perspectives of caring 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.

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.

My Journey with Alzheimer’s Disease: Greg

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.

Heather McQueen: Dignity in Dying

Heather McQueen, deeply affected by her mother Sheena's inhumane death from terminal cancer, has committed herself to advocating for legal changes surrounding end-of-life choices. Sheena endured a rare form of anal cancer and faced the intense physical toll of radiotherapy, leaving her with third-degree burns. As her health deteriorated, doctors discovered a stomach-blocking tumor, eliminating treatment options. She spent her final week in the hospital, unable to return home due to the discomfort of the ambulance trip. Heather believes that at that point, her mother should have had the right to choose to die. Heather reflects on her mother's life and expresses her resentment to the legislation that denied her mother the right to a dignified death.

This narrative can assist a class in unpacking the impact of legislative choices on individuals and families. Discussions can include the role of advocacy in shaping public opinion and influencing legislative changes. This narrative provides an opportunity for students to examine the complexities of patient autonomy, compassion in healthcare, and the potential consequences of restrictive end-of-life care options.

Campaign for Dignity in Dying

The Campaign for Dignity in Dying website features personal health narratives that share individuals' experiences with terminal illnesses and their perspectives on end-of-life choices, including assisted dying. These narratives highlight the emotional, ethical, and legislative dimensions of facing death and advocate for the importance of patient autonomy in healthcare decision-making. See, for example, the stories by Sandy Briden (a scientist with a rare and incurable form of cancer), Lesley Close (sister to John Close, who was diagnosed with Motor Neurone Disease), and Heather McQueen (whose mother, Sheena, died from an incurable cancer).

The website can be a classroom resource for exploring topics related to end-of-life care, assisted dying, and the impact of legislative choices on patients and families. Students can discuss the limited accessibility to assisted death and the implications for patients with and without access to dignified death. The website and overall campaign are also a fruitful example of how personal narratives can play a role in advocacy for policy change.

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.

I Have Congenital Heart Disease So I Created These Comics To Show What My Life Is Like

This is a series of short comics depicting what it is like to live with congenital heart disease (CHD). There are eight multipanel topics: “Mornings,” “Transmissions,” “To do list,” “Kind of works,” “Behavior,” “Stairs,” “Too Young,” and “More than enough.” They all portray this person’s heart as an anthropomorphized character sabotaging their health in frustrating and unpredictable ways, like that of a misbehaving child. Each comic has a caption underneath giving more context than the minimal dialogue provides. The series is honest, comedic, and ultimately inspiring. The author explains how they seek to demystify CHD and debunk stigmas around young people having heart disease or getting pacemakers as well as not “looking sick.” This would fit in well into a class on graphic narratives to teach about the advocacy through illustration and how to write effective dialogue, a premed class teaching about heart disease to provide a patient perspective on the social difficulties of living with it, or a class discussing rhetoric of illness stereotyping to better understand why and how some diseases become more stigmatized than others.

Covered-19

Artist describes the work displayed on this page this way: "COVERED-19 | CONVITE-19 COVERED19 is a live painting series influenced by the experiences of quarantine. Participants are invited to send a full body photograph that represents their thoughts and feelings about the COVID19 pandemic. The photograph is used to inspire the artist, Ibraim Nascimento, to create an original painting through a live video with the participant. By creating a virtual space for discussion, COVERED 19 allows the individual to tell their story. This series explores the concept of the 'new normal' and the abnormal, changes in day-to-day behavior like wearing masks, and self-reflection about the future. What will be the 'new normal'? Can we go back to our way of life post COVID-19?" Paintings could be used to discuss visual narratives, who tells stories of illness for others and how, and how people make meaning of visual representations versus oral/written storytelling. This could be done in Spanish classes from lower intermediate up, or English classes in many disciplines: health studies, media, writing courses.

Please See Me

Online literary journal that features health-related stories in the form of fiction, creative nonfiction, poetry, and art, as well as the occasional film and interview. Issues include multiple works around a specific theme (e.g., Pain, Hope, Mental Health, Women's Health). Work features voices of patients, providers and "healthcare consumers" from their own experiences and perspectives. Written submissions are 4000 word maximum. Examples of featured works include: A mixed media art piece on pain, grief, and hopelessness from an artist dealing with loss and addiction (lil peep in Issue #2: Pain), a poem about medical debt ("Johns Hopkins Sues Patients, Many Low-Income, for Medical Debt" in Issue #9: Open Call), and a mother’s experience raising a son with intellectual disabilities and grappling with an Alzheimer’s diagnosis (Forgetting Aiden in Issue #1: Conversation).