Tag: open access

Laury’s story: ‘Mum became utterly lost in the fog of her own mind.’

Laury reflects on her experience as a caregiver for her mother, who passed away from Alzheimer’s disease. She recounts the journey through various stages of the condition, describing the initial use of memory aids, the gradual loss of her mother’s cognitive and physical abilities, and the difficult decision to place her in residential care. Laury’s story also outlines the challenges of saying goodbye to a loved one at the end of a long disease.

This story can be used for a class interested in the social, emotional, and financial impact of long-term disease on both the patient and caregivers/loved ones. This story could also be used to look at death and dying through a personal and empathetic narrative which can lead to discussions about stigma and fears that surround death, especially for those with chronic or terminal illnesses.

I Walked off Alone to get my Tubes Tied

In this informative essay, the author retells the stories of Gopli Gameti and Parvati Meghwal, two women in rural Udaipur from the Gameti community. Women in this community are often left behind as their husbands migrate for work. This story highlights the challenges faced by women in these rural areas in making health and life decisions independently.For example, women must seek healthcare (which can often be far away, expensive, or logistically difficult), navigate maternal choices like tubal ligation, and advocate for their own reproductive care on their own. Gopli also describes the sense of empowerment and liberation that comes with taking control of one’s own health when possible. This narrative can be incorporated into a class focused on gender studies, public health, or sociology. It provides real-life examples of how women in rural settings navigate healthcare decisions and family planning, specifically in the context of male migration. It can facilitate discussions on the intersectionality of gender, migration, and health, allowing students to analyze the socio-cultural factors influencing women’s choices.

Tamara: an Abortion Story

Tamara shares her story of seeking an abortion in the state of California shortly after finishing graduate school and starting a new job. Despite being a former pregnancy options counselor and health educator, she faced challenges in accessing abortion care within the university system and encountered stigmatization from protesters outside the clinic as well as from fellow patients. She also experienced complications from the procedure. Her narrative emphasizes the importance of supportive environments during the abortion process as well as the emotional and financial aspects of the experience. She also addresses the impact of restrictive abortion laws, such as those seen in Texas, on individuals seeking timely and safe procedures. In courses focused on reproductive health, women’s studies, or public health, Tamara’s story provides a firsthand account of the difficulties individuals may encounter in accessing abortion care, including navigating legal restrictions and facing societal stigma.

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.

Let’s Talk About Trauma – A Wound That Never Fully Heals

In this Tedx Talk, High school senior Matilde Antunes shares both the psychology and biology between trauma. Matilde shares her own personal narrative of growing up in a broken home. At five years old her parents divided and forced her siblings to pick sides as well as years of hatred and fights between the parents. Such experiences led her to develop depression as well as trauma that prevailed and stayed with her throughout her life. Matilde refers to this experience and trauma in general as a “wound that never fully heals.” She then discusses the importance of breaking the stigma surrounding trauma and mental health generally through the power of vulnerability and connectivity. This video could be utilized within a classroom setting to explore the psychology behind childhood trauma as well as a way to expand on the causes of trauma.

Sandy Briden: Dignity in Dying

Sandy Briden, a 57-year-old chemistry lecturer and scientist from Twickenham, London, shares her personal journey with a rare and incurable form of cancer called sarcoma. Diagnosed in December 2015, Sandy underwent a major operation, briefly experienced remission, and returned to work. However, in August 2016, doctors revealed inoperable tumors, making her diagnosis terminal. Sandy opted for palliative chemotherapy and was able to witness her son’s wedding and her granddaughter’s birth. However, Sandy advocates for the option of assisted dying, viewing it not as an end to life but as a means to live without the constant fear of a painful death, allowing her to say goodbye peacefully. The website reports that Sandy passed away in 2017, though it does not give details of her passing.

This can prompt discussions on topics such as end-of-life care, assisted dying, and the emotional aspects of facing a terminal illness. It gives valuable insight into patient autonomy, the role of medical interventions, and the ethical considerations surrounding assisted dying. Students can explore the emotional and ethical dimensions of healthcare decisions, fostering critical thinking and respectful dialogue on sensitive topics related to death and dying.

John Close: Dignity in Dying

This narrative is written by Lesley Close, John’s sister. In 2001, at age 53, John was diagnosed with Motor Neurone Disease. By Christmas 2002, he required full-time care, unable to stand, swallow, or communicate without assistance. John expressed a desire for assisted suicide, seeking a death that was peaceful and dignified. Lesley supported his decision, finding comfort in knowing he had control over his final moments. John’s death was facilitated by a barbiturate overdose. Reflecting on the experience, Lesley wishes there was legislation that would have allowed John to have his death at home.

Teachers can use John’s story to explore the complexities of end-of-life decisions and the role legislation plays in providing individuals with choices. This story also touches upon the role that personal stories can play in persuasion around policy and legislation, as John’s physician later testified that his experience caring for John changed his own views. Students can engage in debates surrounding assisted dying, considering both moral and practical aspects, and examine how personal narratives can challenge or reinforce theoretical perspectives.

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.