Tag: chronic illness

Living with HIV: Six Very Different Stories

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.

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.

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.

Even Superheroes Get Diabetes

This book can be purchased at book stores or online. Alternatively, there is a free reading of the book on youtube at this link: https://www.youtube.com/watch?v=w5uKTvYN6bw

“Even Superheroes Get Diabetes” by Sue Houle is a unique comic book that tackles the topic of diabetes in a creative and relatable way, especially for young readers. The narrative is presented in a comic book format, adding an engaging and visually appealing element to the story.

The protagonist of the book is a young boy who discovers that even superheroes can have diabetes. The story unfolds as the boy learns to navigate life with this condition, and the narrative is paired with many superhero-themed elements, making it both entertaining and informative.

The book not only addresses the practical aspects of managing diabetes, such as monitoring blood sugar levels and taking insulin, but also goes into the emotional and social aspects of living with a chronic condition. It explores the life of the young superhero, such as explaining his condition to friends, dealing with potential misconceptions, and finding the courage to embrace his unique identity. Throughout the story, the author incorporates valuable information about diabetes management, making it an educational resource for both children and their parents. The use of superheroes as characters helps destigmatize diabetes, showing that anyone, regardless of their abilities or strengths, can be affected by the condition.

Overall, “Even Superheroes Get Diabetes” is both a heartwarming and empowering book. The creative storytelling approach, coupled with vibrant illustrations, makes it an excellent tool for raising awareness and fostering understanding about diabetes among children and the broader community.

This comic could be used in classroom settings for pre-med and public health students to learn about the impacts of creative narratives, especially when interacting with children. This provides a unique type of narrative that can be analyzed visually alongside a discussion of the content. It can raise questions about effective forms of communication with children and their parents and emphasizes the role of art in narrative medicine.

Josh’s Own Story – Living with HIV

This health narrative comes from a personal Blog entitled I’m Still Josh. Josh Recounts his journey from testing negative for HIV in November 2011 to being diagnosed with HIV-1 in January 2012. Despite the initial shock and fear, he remained resilient and committed to raising awareness about HIV, challenging laws in Tennessee and stereotypes associated with HIV. Josh highlights that HIV is not a punishment and that individuals living with HIV are not “dirty.” The author discusses the importance of informing sexual partners due to legal obligations but expresses a positive attitude, asserting their undetectable status and the ability to maintain a fulfilling life, including engaging in sexual relationships.

In a health narratives class, this story could be utilized to explore the emotional and social aspects of living with HIV. It provides insight into the personal challenges, societal stigmas, and legal implications associated with HIV. The narrative encourages discussions on the intersection of health, law, and personal identity, as well as the importance of destigmatizing HIV and promoting awareness. Josh’s narrative could serve as a platform for discussions on public health policies, the impact of legal frameworks on individuals with HIV, and the role of storytelling in health advocacy.

Living With HIV for 15 Years: What I Have Learned, Loved, and Loathed

This narrative traces Henry’s journey as a person living with HIV, offering a profound exploration of the emotional, physical, and social dimensions of his experience. Henry shares his experience of discovering his sexual identity and the eventual acceptance of being queer. Henry was diagnosed with HIV in 2006 and his story touches upon the challenges faced during the seroconversion period, reluctance to start antiretroviral therapy, and his subsequent health struggles. Henry also reflects fifteen years post-diagnosis on the dual nature of HIV as both a gift and a curse, acknowledging its impact on their perspective and relationships. He encourages others to be proactive in their care, emphasizing the advancements in HIV competency in the medical, political, and social spheres. The story concludes with a powerful message of self-compassion, urging individuals living with HIV to be good to themselves and recognizing that HIV is a condition, not a death sentence.

In a health narratives class, this story could be used to delve into the multifaceted aspects of living with HIV, from the initial shock of diagnosis to the ongoing management of the condition. It offers insights into the importance of community support, mental health services, and proactive healthcare in navigating life with a chronic illness. Additionally, the narrative could serve as a platform for discussions on stigma, disclosure, and the evolving landscape of HIV in healthcare and society.

What I’ve learned after living with HIV in secret for years

ABC News producer Tony Morrison shares his personal journey living with HIV in a powerful essay on the eighth anniversary of his diagnosis. He discusses the emotional challenges, societal stigma, and the impact on his dating life. Morrison emphasizes the importance of disclosure and understanding in relationships, and he challenges HIV-related stereotypes. His essay explores the impact of societal attitudes and stigmatization on mental health and the significance of self-acceptance and living openly. Morrison concludes with a message of resilience, choosing to celebrate life and an open dialogue surrounding HIV.

This narrative can stimulate discussions on topics like HIV education, destigmatization, and the importance of empathy and support for individuals living with stigmatized chronic illnesses. Teachers and students can use the essay to foster understanding, promote open dialogue, and encourage others to critically examine societal attitudes towards HIV and AIDs.