Type of Submission: Health Story

My Sister’s Keeper

“My Sister’s Keeper” is a fictional story written by Jodi Picoult. It revolves around the Fitzgerald family, whose lives are profoundly affected by their daughter Kate’s long-term battle with leukemia. In a unique ethical dilemma, the parents conceive another child, Anna, specifically to serve as a compatible donor for Kate. As Anna gets older, she becomes increasingly aware of her role in her sister’s medical procedures. At a certain point, Anna decides to sue her parents for medical emancipation, seeking control over her own body. The story follows the legal battle alongside a struggling family trying to make Kate’s life as good as possible. This combination brings into light the complexities of love, sacrifice, autonomy, and the implications of using one child to save another. This novel explores these issues through the perspective of every character, including the attorney. The mother’s perspective explores grief, strength, and the need to fight for one’s child’s life no matter what. The father’s experience shows an example of someone who wants so desperately for his daughter to live, but also wants to protect the autonomy of his other daughter. The brother’s perspective tells the story of a boy who feels neglected in a family focused on a cancer diagnosis. The two sister’s go back and forth in caring for each other, and it becomes clear through this dialogue that Anna is suing her parents at her sister’s request, as her sister is ready to die. And the attorney, who suffers from epilepsy, explains his support for young Anna, despite her parent’s anger, as he knows what it’s like to not have control over his own body. The combination of perspectives explores the moral issue of bodily autonomy as deeply complex and woven with people and choices to listen to. This novel could be used in classes on medical ethics, as it raises a complex story full of moral dilemmas surrounding medical decisions and familial relationships in the face of childhood illness. It prompts conversation surrounding parental authority, blurred lines between love and autonomy, and childhood cancer.

Specifically, this story shows how cancer can affect a family, touching each person so uniquely. Kate, after a whole life of fighting, was ready to let go, whereas her mother would do anything and everything to keep her alive. Anna was happy to donate blood and organs to her sister, but sued her parents to honor her sister’s wishes, even though she lost her parents’ trust. And the attorney gives an example of when it can be important to support and listen to a child, even when their parents don’t agree. This film highlights that cancer and organ donation are not straightforward issues, and sometimes a person’s wants are contrary to the common narrative.

This book is a longer read, and it is such a complex story, which makes it difficult to break apart for shorter sections, but there is a wonderful film adaptation that could be watched in a class period. The book and film are slightly different, but all of the relevant topics and questions remain. An interesting assignment could be having different people read different perspectives and discuss what their assumptions about the other characters would be after only reading from one point of view.

The Boy in the Moon: A Father’s Journey to Understand His Extraordinary Son

“The Boy in the Moon: A Father’s Journey to Understand His Extraordinary Son” by Ian Brown is a deeply personal memoir that chronicles the author’s experiences with raising his son, Walker, who was born with a rare genetic disorder called Cardiofaciocutaneous Syndrome, or CFC. The book explores the challenges, joys, and complexities of caring for a child with special needs. He explains that his son sometimes feels like the man in the moon, and he knows there is no man there. This book chronicles his exploration of why his son, then, feels so important to him. He explains how deeply he wants to know his son’s thoughts, but this question always brings him back to what goes on in his own head. Specifically, he brings up issues of the child he thought he would have had, what a normal childhood looks like, what a normal parenthood looks like, and the grief (and joys) of having a child who is not like other people. He explores, too, how amazing and perspective-changing it can be to love someone who has unique medical needs and functionality. He feels very thankful for his life with his child, despite the challenges. Brown shares the intimate details of their life, discussing the impact of Walker’s condition on daily routines, relationships, and perspectives on parenthood. He discusses how he spends much more time with his child, and contemplates the fact that Walker cannot be independent or grow into independence like other children. He learns that love and parenthood is unconditional, and how to love someone who can’t form relationships the same ways as many people do. The narrative delves into the medical aspects of CFC, as well, spreading awareness about this disorder. As Brown grapples with the emotional and practical aspects of caring for Walker, he also reflects on the broader themes of disability, acceptance, illness, and what it means to be a father.

This memoir could be used in a class interested in discussing the implications of illness and disability for a family. It addresses the complexities at home caretaking and a rare condition, making it a good book to read for students wanting to understand home care and disability in childhood. Classes hoping to engage with first-person narratives addressing childhood illness could also use this book as an example of a caretaker’s narrative. With this, individual chapters of this book could be used to explore the questions this story raises. Brown’s writings, at any point in the story, could be discussed and used in a class discussion.

To Preserve My Health, I Had to Learn to Truly Do Nothing. It’s Harder Than It Sounds

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.

Sick Woman Theory

Sick Woman Theory by Johanna Hedva is an exploration of the intersection of illness, disability, and feminism. Hedva challenges traditional notions of productivity and success, advocating for a reevaluation of societal attitudes toward bodies that deviate from the norm. The theory delves into the experiences of sick and disabled individuals, highlighting the systemic issues they face, and calling for a more inclusive and compassionate understanding of chronic illness. Hedva’s work prompts a reconsideration of the value placed on health and challenges the ableist structures ingrained in society.

Specifically, Hedva provides a story of when they were unable to participate, in the streets, during the Black Lives Matter protests. Due to their many illnesses, including PTSD, anxiety, fibromyalgia, and endometriosis. Hedva describes chronic illness, writing, “I have chronic illness. For those who don’t know what chronic illness means: the word “chronic” comes from the Greek “chronos,” χρόνος, which means “time” (think of “chronology”). In certain contexts, it can mean “a lifetime.” So, a chronic illness is an illness that lasts a lifetime. In other words, it does not get better. There is no cure.” They explain the implications of chronic illness in times of resistance.

This source could be used in a course discussing disability and chronic illness, especially when focusing on intersectionality. It raises questions about who is allowed to participate in society, and how they are allowed to participate. Hedva affirms the experience of disabled bodies, advocating for resistance through rest. Courses interested in illness and politics, illness and relationships, and how disabled bodies can mobilize without moving would benefit from this reading.

ShayShitsinaBag TikTok Channel

Shay Haberstroh, via TikTok, shares their story with Crohn’s disease and an ostomy bag. She talks about doing daily tasks, her love life and marriage, personal relationships, and even makes fashion and cosplay videos for people who have an ostomy bag. Her story explores chronic illness and disability, mental health, as well as what it’s like to face the idea of death as a young person. One of her viral videos shows her, shocked, with a caption that says, “realizing i’ll shit into a bag forever.” She then brings in humor and relief with the caption, “my asshole will be permanently clean.” She explores an issue that people don’t often talk about, bringing comfort to the conversation of body-differences and life saving medical devices, like an ostomy bag. She makes chronic illness an accessible and humorous topic on a platform that lots of young people use, fighting shame.

This TikTok account could be used to explore the use of different platforms for storytelling and advocacy. It could be used to discuss normalizing bodily differences, and the importance of making stories accessible and potentially, humorous. As well, healthcare professionals could benefit from watching these videos, listening to Shay’s critiques of the healthcare system, and evaluating how they could change their practice to accommodate more people and their individual experiences.

She gives great examples of how people with invisible illnesses, as well as women, are often overlooked in the healthcare system. Many of her videos are skits that she creates, acting out scenarios where she was treated poorly in healthcare or not listened to by doctors, despite the fact that she has a serious illness.

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.

Losing Each Other when Caregiving as a Family

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.

Squirmy and Grubs YouTube Channel

“Squirmy and Grubs” are a married couple who make Youtube videos, podcasts, and Instagram posts about life as an interabled couple. Shane, who has spinal muscular atrophy, and Hannah, who does not, share their daily lives, challenges, and adventures. They provide insight into their interabled relationship, educating viewers about disability awareness, acceptance, and the importance of genuine connections. Their youtube channel spreads awareness about Spinal Muscular Atrophy, but also dives into what it’s like to be together as one person who has a physical disability, and one who does not. They share videos that share their daily routine and how Hannah cares for Shane. Though, they also emphasize the ways that Shane gives care to Hannah, as well, even though he has very limited mobility. This Youtube channel is important because it shows how an interabled relationship is not really so different, and that disabled people can be in genuine and fulfilling relationships.

This youtube channel gives a first person perspective of life as an interabled couple and could be used in a classroom setting for classes focused on learning about reciprocal care, and the logistics of taking care of someone with a physical disability in a way that shows humanness, support, reciprocity, and sensitivity. They provide many great videos on how certain people with disabilities would like to be addressed, cared for, and interacted with in public and private settings, sharing a unique perspective. Specific videos to watch for learning and analytical purposes are titled, “Intimacy in Our Marriage Q & A,” “We’re Hiring a Caregiver?!” and “Our Physical Intimacy and Romance Explained.” These videos provided a candid look into their life as an interabled couple, sparking discussion on the role of media representation of disability, and how humor plays into storytelling and health narratives.

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.

Ashley’s Story

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.