Type of Submission: Health Story

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.

The Body Keeps the Score

“The Body Keeps the Score” is a book written by Dr. Bessel van der Kolk, a psychiatrist and trauma expert. The book explores the impact of trauma on the body and the ways in which the body stores and remembers traumatic experiences. Dr. van der Kolk emphasizes the interconnectedness of the mind and body in the experience of trauma, challenging traditional views that focus solely on psychological aspects. The book delves into various therapeutic approaches and modalities that can help individuals recover from trauma, including neurofeedback, yoga, and EMDR (Eye Movement Desensitization and Reprocessing). It also discusses the author’s own experiences working with trauma survivors and presents case studies, specifically with children that illustrate the challenges and successes in treating trauma. This book could be used to explore from both a scientific and narrative perspective how trauma presents itself and actually layers the body. It could aid in discussions based around how one heals from trauma and how to give trauma informed care.

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.

Visual and narrative comprehension of trauma

“This article argues that though art is assumed to be useful as an intuitive means of representation, its usefulness in offering insight into trauma depends on accompanying narratives. Four artists’ works considered herein illuminate how the synergistic interplay between art and expository input from personal narratives can augment comprehension of trauma”. This article includes artwork from Luzene Hill, David Wojnarowicz, Tania Love Abramson. Luzene Hill’s work, Retracing the Trace, depicts their experience with rape and the silencing of women within our society. The art installment shows her body lying on the ground with blood red knots scattered around her body. This article could be used in a class discussion based on how trauma can be made tangible and expressed through mediums such as art.

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.

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.