Health Story Type: Webpage

Patient Stories – People Managing Chronic Conditions

The Agency for Clinical Innovation is an Australian organization seeking to promote innovation and implementation of innovation in healthcare. Their site offers a range of resources including narratives, networks, and information. Under the resources tab, they offer five patient stories about managing chronic illness with the stated purpose: “These patient story videos highlight the importance of self-management and coordinated care to support people living with chronic conditions.” One of the featured videos titled “Kay’s Story,” provides an interview of Kay describing her experience and relationship with chronic illness, specifically diabetes, Graves’ Disease, and COPD. These diagnoses led to Kay developing agoraphobia, a fear of leaving one’s home or going outside. She reached out for help and support through the Aboriginal Medical Service, which provided her with steps to begin building confidence in going out, and self-managing her chronic illness and agoraphobia. The tone of the video is uplifting and positive, and she describes how this support allowed her to overcome her agoraphobia and begin practicing and advocating for self management. Brief stories useful for undergraduates, especially pre-health majors. Also community groups looking for ideas to promote wellness.

Family Stories of Tay-Sachs Disease

The Cure Tay-Sachs Foundation website contains many resources including information about the disease, carrier statistics, family stories, research initiatives, and fundraising opportunities. Tay-Sachs disease is a rare, fatal genetic condition that destroys nerve cells in the brain and spinal cord primarily in babies and young children. It has a history of affecting people of Ashkenazi Jewish descent but now is seen in other ethnic backgrounds. If you click on the “family stories” tab, you can view over twenty personal narratives of children who were diagnosed with Tay-Sachs, often written by parents. The stories are divided into three short sections documenting the journeys from when they first realized something was wrong, how the illness progressed, and what the family’s ultimate decision was in how to handle it. One of the stories is told from the perspective of an adult with late onset Tay-Sachs as well as bipolar disorder, and she describes the experience of dealing with both conditions simultaneously. Another feature of this website to explore is the “drawings of our kids” tab. You can click on any of over fifty names to see an original drawing of children who have died from Tay-Sachs, all drawn by one of the grandfather of one of the children. The family stories would be a very impactful reading assignment in a course about genetic diseases to increase awareness about the many different ways the same disease can affect individuals and families. It could also fit into a bioethics course to prompt discussions or even essays on if/when it is ethical to stop providing treatment and medical intervention for a patient who has a terminal illness with serious impacts on quality of life for the patient and family.

Cami’s Polio Story

Cami's story is one of several on this section of a site hosted by Children's Hospital of Philadelphia, which includes several stories of individuals who had polio. Cami contracted polio as a child in 1954; this short personal story emphasizes the long-term physical and emotional struggles involved in overcoming the disease. Cami expresses concern about the current resistance to vaccines, particularly for diseases like COVID-19, and criticizes the choice to reject proven vaccines as foolish, selfish, and potentially deadly. Cami highlights the lasting impact of vaccine-preventable diseases and questions the wisdom of risking children's lives by refusing vaccination, drawing on her own experience when no vaccine was available for polio. Cami’s story could be used to discuss the ethical and historical considerations of vaccination. It could also illustrate the use of story for public health persuasion.

Poetry for Sexual and Reproductive Justice

Sexual and Reproductive Health Matters (SRHM) is an organization compiled of researchers, activists, writers, as well as other experts devoted to negating ideologies and other harmful policies, philosophies, laws, etc. against sexual and reproductive health. They are dedicated to procreating programs and policies that are focused on social justice as well as human rights, including through their journal. One of the journals, “Poetry for Sexual and Reproductive Justice,'' is a collection of 57 poems, some in Spanish, all written by individuals outside of the organization and relating to sexual and reproductive health. Some examples of the topics addressed in poetry are stigma around menstruation, sexual violence, contraceptives, and misogyny to name a few. This anthology could be used as a resource in a syllabus focused on women’s, reproductive, or sexual health. It could additionally be an aid within a creative writing class.

Eight Lives – United Nations Population Fund

From the website: “UNFPA is the United Nations sexual and reproductive health agency. Our mission is to deliver a world where every pregnancy is wanted, every childbirth is safe and every young person's potential is fulfilled. This publication, Eight Lives: Stories of Reproductive Health, relates the tales of eight women who have endured the challenges of poor reproductive health.” The anthology includes stories about breaking the cycle of female genital mutilation, family planning, HIV prevention, sexual violence, becoming a teen mother, maternal health, midwifery, and obstetric fistulas. “Each story gives a voice and a face to those most affected by the failures of a dysfunctional health system — and by gender inequality, violation of their human rights, blatant disregard for their social and cultural circumstances, and abject poverty.” This source could be utilized in a class focused on global perspectives on reproductive and sexual health. Discussion could be focused on marginalized communities within the healthcare system as well as differences between healthcare systems across countries.

Children’s art as visual narrative

This article about visual narrative highlights the effectiveness of non-verbal expressive arts like drawing, painting, and constructing as therapeutic and restorative experiences. Trauma survivors, including children, may find it challenging to articulate their experiences verbally, as trauma can impact the brain's language centers. The article contrasts previous approaches that encouraged forgetting traumatic events with the current understanding of the importance of acknowledging, validating, and providing mental health intervention for survivors, allowing them to tell their stories through creative acts. The article references the project "Forced to Flee: Visual Stories of Refugee Youth from Burma," which compiles a book of art expressions by young refugees (a page for the kickstarter campaign for the project was available as of 12/20/23 at this link). The project showcases how visual narratives, conveyed through art, can tell powerful stories, open hearts, and build bridges of understanding. By honoring the visual narratives of youth, the project not only raises awareness about human rights issues but also offers a glimpse into possibilities for reparation and redemption for young survivors.

Neurodiversity Poems

This anthology houses a multitude of poems related to neurodivergence. The authors all have different backgrounds as this is an open site where anyone can publish their work. The site is searchable and poems are tagged. Some examples include a poem about masking, the perception of “normal,” and “praying for a neurotypical brain.” One poem details an individual's experience with growing up and feeling like they constantly are on the outside looking in and having to hide aspects of themselves to fit in. This site could be utilized as a resource for creative writing in terms of neurodivergence. As poems from personal, first hand experiences of neurodivergence, they provide insight as to the nuances to individual experiences that caution us against generalizations and stereotypes.

Mental health Poems for Teens

The Poets.Org website of the Academy of American Poets has curated this collection of 14 poems related to mental health that were selected for teen readers (part of a series of "Poetry for Teens" on various topics). Some themes throughout the poetry are depression, anxiety, as well as hope and resilience. Each poem includes a description of some of the themes within it as well as details about the author. The pieces span a range of time periods and a variety of authors with different backgrounds including, for example, Emily Dickinson and Sylvia Plath, as well as Naomi Shihab Nye and Ada Limón.

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

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.