Healing Through Words: How Creative Writing Empowers Caregivers
From The Observatory
Source: The Observatory
More than just a creative outlet, writing offers caregivers a powerful, cost-effective way to reduce stress, process emotions, and rediscover purpose—often with transformative mental health benefits.
This article was produced for the Observatory by the Independent Media Institute.
“Healing Through Words: How Creative Writing Empowers Caregivers” by Birgitta Vaivai-Soderberg is licensed by the Observatory under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License (CC BY-NC-SA 4.0).
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Introduction
“There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.” —former First Lady Rosalynn Carter
Caregiving is a fundamental aspect of human history. Deeply rooted in the fabric of society, it crosses continents, countries, cultures, and religions. In simple terms, a caregiver is someone who meets the daily needs of another person who can’t care for themselves due to age, disability, illness, or mental disorder. Caregiving is a complex field that encompasses professional caregivers, including nurses, home health aides, and certified nursing assistants. It also includes a crucial group—informal caregivers—who are unpaid and are often related to the recipient or are part of their close network.
Some common conditions that informal caregivers provide care for include dementia, Alzheimer’s disease, Parkinson’s disease, cancer, COPD, stroke, developmental disabilities, and mental health and psychiatric disorders. Responsibilities may include feeding, bathing, dressing, running errands, performing household chores, assisting with mobility, providing transportation, administering medication, and coordinating with health care providers.
Although informal caregiving can be personally rewarding, its potential negative impact on caregivers’ finances, family relationships, and personal well-being is undeniable. According to a 2020 report conducted by the National Alliance for Caregiving (NAC) and the American Association of Retired Persons (AARP), 53 million people in the United States provide unpaid care to an adult or child with special needs. Of the 48 million who care for an adult, 61 percent also work full-time or part-time. Many such caregivers eventually take a leave of absence or reduce their work hours.
Furthermore, 30 percent of caregivers belong to the “sandwich generation,” meaning they care for their aging parents in addition to raising their own children or grandchildren. Informal caregivers of adults provide care for an average of 24 hours a week and spend over $7,200 annually on caregiving costs, comprising 26 percent of their income. Perhaps most shockingly, the economic value of unpaid family caregiving is an astounding $600 billion per year.
Unfortunately, as studies show, Americans will only become increasingly reliant on caregivers. By 2034, the U.S. population will include more adults aged 65 and older than children under the age of 18, says AARP. Worryingly, the number of potential caregivers is predicted to decline while the number of people who will require care is expected to increase.
The criticality of informal caregivers was illustrated in the deaths of Gene Hackman and his wife and caregiver, Betsy Arakawa, who were found dead in their home on February 26, 2025. It was later concluded that Arakawa had died around February 12 due to hantavirus pulmonary syndrome. Ninety-five-year-old Hackman, who was unable to care for himself, died around a week later due to cardiovascular illness complicated by advanced Alzheimer’s disease. Authorities added that, given his cognitive impairment, it was possible he was not aware that his wife was deceased during his final days.
Emma Hemming Willis, who has been a vocal advocate for caregivers since her husband Bruce Willis was diagnosed with aphasia in 2022, said of the deaths, “I do really believe that there is some learning in this story… and that is that caregivers need care too and that they are vital, and that it is so important that we show up for them so that they can continue to show up for their person.”
She’s right. Informal caregivers—who are often referred to as “invisible patients” because their needs and well-being are frequently overlooked—need care too, as many experience a deterioration in both physical and mental health. This is largely because most informal caregivers are thrust into their role with little or no skills training. Competencies that caregivers commonly need but often do not receive adequate preparation for include medical and nursing skills, functional rehabilitation skills, and safety supervision skills. As a result, many caregivers are not equipped to perform complex and high-intensity caregiving duties for their loved ones. This gap in skills can lead to significant stress, contributing to caregiver burden.
Consequently, many caregivers report feeling burnt out and physically exhausted, which can lead to feelings of depression, anger, worry, guilt, anxiety, and grief. Some caregivers also experience post-traumatic stress disorder when caring for loved ones with severe medical illnesses. Other symptoms of caregiver stress include fluctuations in weight, changes in sleep habits, social withdrawal, and loss of interest in activities.
Caregivers may also abuse alcohol or other drugs, including prescription medications. Unfortunately, caregivers often don’t find the time to address their health issues, which leads to prolonged illness. Tragically, studies also reveal that caregivers are an at-risk group for suicidal ideation, suicide attempts, and deaths by suicide.
Creative Writing: A Coping Mechanism for Caregivers
Many caregivers choose to cope with their daily challenges by visiting therapists or joining support groups. However, research has also shown that creativity can be an effective way for caregivers to reduce stress and improve mood, as it provides opportunities for them to be reflective, learn new skills, and nurture a sense of accomplishment and purpose. This can help them experience empowerment, flexibility, self-efficacy, and optimism, which, in turn, can allow them to gain new perspectives on their caregiving challenges and find effective coping strategies. Creative activities often recommended for caregivers include painting, dancing, singing, gardening, cooking, and crafting.
However, one coping mechanism that has emerged as particularly powerful is writing. Many caregivers pursue writing because it can be a low-cost, flexible, and private activity that is free from the social constraints that may arise with therapists or support groups.
Moreover, the health effects of writing on the brain are well known. As neurologist Judy Willis put it:
“The practice of writing can enhance the brain’s intake, processing, retaining, and retrieving of information… it promotes the brain’s attentive focus… boosts long-term memory, illuminates patterns, gives the brain time for reflection, and when well-guided, is a source of conceptual development and stimulus of the brain’s highest cognition.”
But how can writing help people cope and heal? A growing body of research in the field of positive psychology has found that writing about gratitude and positive experiences—also known as “gratitude journaling”—can help people feel more optimistic and enhance their overall well-being. It can also reduce depression, stress, and symptoms of physical illness. This is largely because experiencing gratitude can restructure cognitive processes that help individuals shift from negative to positive thinking, leading to enhanced well-being.
“Actually sitting down and thinking about someone or something that happened that day makes me realize how many things for which I am truly grateful,“ wrote commenter Andrea Nancy Fox on the gratitude journal webpage of the Greater Good Science Center at the University of California, Berkeley. “Writing it down helped to make me think about it more.”
In contrast to the approaches taken in positive psychology, much of the existing literature has focused on the healing power of reflecting on one’s negative experiences through writing. In fact, studies show that individuals who have written about distressing life events through “expressive writing” have reported experiencing an impressive range of physical and emotional health benefits. Although expressive writing is frequently practiced in journaling, it can also be tied to memoir writing and fiction writing. These forms of creative writing can serve as constructive outlets for caregivers to actively engage with their emotions, process grief and loss, cope with adversity, and begin the healing process. Each type of writing can enable caregivers to experience these benefits in various ways:
- Expressive writing can help caregivers explore and process emotions about painful experiences, which can increase self-awareness, reduce stress and depression, enhance overall psychological well-being, and improve physical health.
- Grief memoirs can help writers extract meaning from their experiences and adopt new life perspectives, allowing them to rebuild their identities in the wake of loss.
- Fiction writing gives authors the freedom to create more empowering narratives and explore their identities, while also allowing them to process their emotions and grief at a safe distance.
While each form of writing may be different, the act of writing itself can be a life-changing tool for self-discovery and self-empowerment, allowing caregivers to reclaim their unique narratives and envision new futures for themselves.
Expressive Writing
James W. Pennebaker, social psychologist and professor emeritus of psychology at the University of Texas at Austin, was the first to conduct pioneering research into expressive writing, which requires individuals to write about their deepest thoughts and feelings on negative, distressing, or traumatic experiences. This is intended to help the writer process difficult emotions, reflect on their challenges, gain insights, foster self-awareness, and enhance personal growth.
Studies have shown that it can also enable the writer to experience a shift in perspective, allowing them to consider other people’s viewpoints, which is a key factor in the processing of negative emotions. This type of deeply emotional and personal writing has been closely associated with The Diary of a Young Girl by Anne Frank, as the author employed introspection and insight to reflect on her fears and traumas while living through the horrors of World War II.
In his first experiment in 1986, Pennebaker asked participants to write about their deepest thoughts and feelings regarding a significant emotional issue that had impacted them. Participants were instructed to connect the topic to their childhood, their relationships with others, their past, present, and future. They were also informed they could write without concern for spelling or grammar, and that their writing would be confidential. He found that participants who wrote for 15 minutes a day over four consecutive days reported improvements in physical health six months post-test, with fewer doctor’s visits and sick days.
Pennebaker’s groundbreaking work spurred many other researchers to investigate expressive writing using variations of his protocol. In such experiments, writing groups were typically asked to practice expressive writing for three to five sessions, often over consecutive days, for 15 to 20 minutes. A comprehensive academic review of such studies showed that most participants experienced immediate increases in distress, negative mood, and physical symptoms. However, at follow-up, they reported both physical and emotional health benefits. The physical health outcomes included improvements in immune-system functioning, blood pressure, lung function, and liver function. The emotional benefits included improvements in mood, psychological well-being, depressive symptoms, and post-traumatic intrusion and avoidance symptoms. The studies also revealed various social and behavioral outcomes, including reduced absenteeism from work, quicker re-employment after job loss, and improvements in academic performance, sporting performance, and working memory.
Some researchers have specifically examined the impact of expressive writing on caregivers. A 2017 study found that depression was significantly reduced in spousal caregivers of cancer patients after they took part in expressive writing exercises. Furthermore, a 2008 study concluded that expressive writing reduced post-traumatic stress disorder symptoms in caregivers of people with psychosis.
But what are the underlying mechanisms that make expressive writing beneficial? There is no one answer, as studies have shown mixed results for several theories.
One possibility is that the individual experiences catharsis, or a release of strong or repressed negative feelings. Another possibility lies in the interplay between emotional inhibition and confrontation. Repressing thoughts about traumatic events can lead to physiological stress, ruminations, and longer-term illness. In contrast, confronting a trauma may decrease physiological stress and facilitate cognitive integration and understanding. Thirdly, repeated exposure to the traumatic experience through expressive writing may reduce negative emotional reactions to it. Lastly, expressive writing can enable the development of a coherent narrative through cognitive processing.
Pennebaker’s studies found that those who benefited the most from expressive writing were those who used more positive-emotion words, a moderate amount of negative-emotion words, and an increased number of words showing causation and insight, including “because,” “reason,” “understand,” and “realize.” The use of cognitive words indicates the writer is actively structuring, interpreting, and making connections about their negative experience. Creating a coherent narrative of an event can lead to more adaptive internal schemas and a more integrated understanding of it. It is widely argued that this narrative formation is essential for expressive writing to produce benefits.
Many caregivers have practiced expressive writing in their journaling routines. Lisa M. Shulman, professor of neurology at the University of Maryland, started journaling when she was a caregiver for her husband, who passed away from cancer 18 months after his diagnosis. In her book, Before and After Loss: A Neurologist's Perspective on Loss, Grief, and Our Brain, Shulman linked her healing experience to the aforementioned theories. She explained that practicing expressive writing in her journal entries allowed her to confront and examine what the loss of her husband meant to her, how it affected her identity and future, and what aspects of it were so painful. Seeing her experiences on paper demystified the distressing events and decreased the negative impact they had on her.
She writes in the book’s preface:
“In the early months of writing, I contemplated turning my journal into a book. As I moved into the second year without Bill, I questioned whether I had anything original to contribute and whether the time had come to look forward, not back. Yet the urge to document memories and insights had its own life. Notes scribbled by day and night piled up around me. And with time the book’s purpose came into focus. The goal is less memoir, more guidebook, to shed light on common experiences of traumatic loss and how our brain responds and heals.”
Furthermore, continuously writing, reading, and re-reading her entries helped her emotions become more organized and coherent. This allowed her to examine them from new perspectives and give them new meanings, which enabled her to create new interpretations of her experiences and fit distressing memories into her life narrative. She argued that grieving individuals need these new interpretations to redefine themselves and reshape their identities after loss, as doing so can help them envision new possibilities and plan a new future.
Shulman concluded that journaling gave voice to her turmoil, integrated loss into her life story, and was an essential tool in her healing process. It was both creative and therapeutic, with powerful effects on the brain:
“Journaling and other meditative practices are potent tools to buffer the emotional charge of traumatic loss. Our decision-making and behavior are strongly influenced by this emotional charge. The amygdala, nestled deep in the brain, assigns an emotional weight to events, tagging experiences with their emotional power, their intrinsic positive vs. negative quality, their relative attractiveness or aversiveness. This assigned emotional valence has strong effects on our decisions, actions, and behavior. Judicious decision-making depends upon our capacity to buffer loss’s emotional charge; we need personal strategies like journaling to transform the emotional power of loss.”
Caregivers who are interested in expressive writing can get started with Pennebaker’s Writing to Heal: A Guided Journal for Recovering From Trauma and Emotional Upheaval. He also provides some insightful guidance in his brief interview with Nelda Yaw Buckman.
Memoir Writing
Given that expressive writing can have healing benefits, some studies have investigated the therapeutic effects of writing grief memoirs. Although empirical research into the topic is limited, some have argued that longer form emotional writing with a beginning, middle, and ending—that is not conducted under the time restrictions of Pennebaker’s expressive writing protocol—can help the writer construct narrative coherence, find meaning, reclaim agency, and rebuild their identity in the wake of distressing life events.
In her 2006 book, The Caregiver’s Tale: Loss and Renewal in Memoirs of Family Life, Ann Burack-Weiss provided a qualitative analysis of more than 100 caregiver memoirs. She found that many authors based their memoirs on their journal entries, and that most memoirs were written after the care recipient had passed away. She discovered that the memoirs shared numerous universal themes, as they described the emotional toll of caregiving, the struggle to make tough decisions, the caregiver’s insecurities, and the search for meaning in suffering. She concluded that the main overarching story was that of the caregiver who undergoes a journey that begins with sorrow and culminates in a life-transforming experience of self-discovery, in which they redefine their priorities and gain a new perspective on life.
As Burack-Weiss put it:
“Looking backward, after time has distilled the significance of the event, allows individuals who have provided care to uncover the thoughts and feelings that exist below the radar of scientific inquiry, to reflect upon the impact of the situation on the rest of their lives, and to extract meaning from the experience… and to shape the narrative to their own voices.”
In fact, Burack-Weiss found that by the end of most caregiver memoirs, the authors have learned to make peace with the past, let go of resentment, come to terms with unresolved emotions, discover purpose and pleasure in life, and emerge from the shadow of paralyzing anguish. The reader understands that the author’s life continues and that the caregiving experience has taken on new meaning for them.
In her 2020 article, researcher Katrin Den Elzen connected grief narrative with memoir writing through the work of leading bereavement scholar and practicing clinician Robert Neimeyer, who claims that meaning-making is at the core of grief dynamics. His model proposes that the bereaved can make sense of their loss by building new narratives that combine the loss into their life story. They must also bridge the past to the present and the future by maintaining a continued connection to what was lost. By actively engaging with their pain, the bereaved can find meaning and experience a transformation of their grief, which may lead to personal growth, resilience, and wisdom.
Neimeyer posits that the narratives of our lives comprise three storylines: the external narrative (the objective story), the internal narrative (the inner emotional story), and the reflexive narrative (the meaning-making story). Many memoirists’ depictions of the situation, the events, and the story align with this model.
In fact, Den Elzen included these three storylines in her memoir entitled My Decision, which details the story of how her husband had a brain cyst and became fully paralyzed for eight months before his death. Her memoir’s external narrative depicted her husband’s affliction, while the internal narrative depicted her emotional response to it. In the reflexive, meaning-making story, one of the topics she reflected upon was her frustration with the hospital system, which viewed her husband as an illness rather than a human being. Writing the reflexive, meaning-making story was what enabled her to find the more profound emotional truth in her recollections.
In addition, throughout her writing process, she drew upon the principles of the dialogical self theory, which proposes that the self is not a singular being but instead encompasses numerous “I-positions” that engage in an inner dialogue. In her memoir, these identities included I-as-wife and I-as-widow. Exploring and reconciling these conflicting pre- and post-loss perspectives allowed her to construct narrative coherence, rebuild her identity, and find renewed purpose.
Den Elzen added that redrafting painful experiences multiple times over several months was beneficial because it helped her gain distance from the events, allowing her to externalize them. In the context of narrative therapy, “externalization” is the process by which the grievous event becomes separate from the individual. For Den Elzen, this repeated exposure meant she no longer relived the events every time she thought of them. This change in perspective led to a major shift in her relationship with loss, resulting in immense healing, inner peace, and a sense of freedom.
Budding memoir writers can learn from Jessica Handler’s book Braving the Fire: A Guide to Writing About Grief and Loss, or follow tips from Marion Roach Smith, founder of The Memoir Project.
Fiction Writing
However, some caregivers might not feel comfortable writing a memoir if they’re still too close to the anguish or don’t want to expose or upset loved ones. This may explain why some caregivers have become fiction authors, with many centering their novels on fictional accounts of the caregiving experience.
One example is author Irene Frances Olson, who was a caregiver for her father when he had Alzheimer’s disease. She drew upon some of her own experiences while writing her novel, Requiem for the Status Quo. The book tells the fictional story of Colleen, who becomes a caregiver for her father, Patrick, who, like Olson’s father, has Alzheimer’s disease. When family members who are in denial about his condition are unwilling to help her provide care, she is forced to tap into her inner strengths and abilities, leading to moments of self-discovery and victories for both herself and her father along the way.
But what is it about writing fiction that may help caregivers cope and heal? Fiction writing, in the context of narrative therapy, enables the writer to recount their story in a way that allows them to take control over the narrative. Repurposing personal experiences into fiction can empower the writer to shift their harmful storylines and thought patterns toward more positive and constructive ones. Fictionalizing events can also allow a stepping back from painful experiences, which may enable an examination of traumas or repressed thoughts at a safe distance. This can help increase self-awareness, redefine one’s identity, enable meaning finding, and promote healing.
For instance, a caregiver facing various anxieties, frustrations, and stressors may create a character who is undergoing similar hardships. One such example is Colleen, the fictional protagonist created by Olson. Fictionalizing such a character can help the author externalize distressing situations, explore their emotions, and identify their own resilience, strengths, and unique qualities. Furthermore, through character development, the author can expand on the protagonist’s values and motivations, which may allow more favorable storylines about their hopes, dreams, and aspirations to emerge. Fiction writing can also be done in first person or third person, the latter of which can create a psychological distance that allows the author to bypass their inner critic and shift their narrative toward more positive outcomes.
Through such exploration and retelling, the author can make sense of their life and reframe problematic storylines and negative “identity stories.” As a result, a caregiver who initially viewed themselves as a victim may ultimately reframe themselves as a survivor, healer, warrior, or hero, thereby constructing a more empowering narrative about their life.
Jessica Lourey, author of the book Rewrite Your Life: Discover Your Truth Through the Healing Power of Fiction, wrote her first novel in 2006 as a coping mechanism after her husband’s death. Since then, she has written more than 20 novels, which has allowed her to heal across decades continuously. As she put it:
“The healing I experienced makes sense when you consider Dr. Pennebaker’s discovery that two elements above all else increase the therapeutic value of writing: creating a coherent narrative and shifting perspective. These are not coincidentally the cornerstones of short story and novel writing. Writers call them plot and point of view… Writing fiction… lends empathy to your perspective and provides us practice in controlling attention, emotion, and outcome. We heal when we transmute the chaos of life into the structure of a novel…”
Other bereaved individuals choose to privately write fiction in their journal entries instead of publishing book-length novels. In her 2021 research article, Angela Matthews, a former lecturer at the University of Michigan, described how she used journaling to cope with the loss of her son. She initially recorded good and bad memories with him, which helped her accept her loss. However, when she found it difficult to express some of the darker memories with her son, she revised her journal entries, rearranged the order of events, gave people pseudonyms, combined scenes, added fictional experiences, and wrote in the third person. “I found that writing some of my most traumatic experiences as fiction helped me acknowledge and process my grief but still maintain a protective distance from it,” she writes. “Fictionalizing my story also allowed me to look at my experiences in a new way.”
Rewriting themes, characters, and plots through fiction can be a cathartic part of the healing process that helps caregivers feel less lethargic, angry, or depressed. It can provide a space to think about painful moments while also acknowledging them in relation to the larger landscape of traumatic loss. This can be a crucial step in the transformation from grief.
Those aspiring to write fiction can read Jessica Lourey’s Rewrite Your Life: Discover Your Truth Through the Healing Power of Fiction, or get inspired by the moving presentation she gave at TEDxRapidCity.
Start Your Healing Journey Through Writing
Caregivers enrich the lives of their loved ones by helping them navigate life’s roughest seas. They bring light into their lives during the darkest of times. They uplift them when they feel weighed down by the burden of illness. What caregivers contribute to the world is invaluable.
As vital and heroic as they are, caregivers are only human, and without self-care, they can feel broken and exhausted amidst a whirlpool of conflicting emotions. But the evidence is clear: Writing can have healing powers. So if you are a caregiver, go for it. Pour your heart onto a page. Create a window into your life. Build a safe place to process, examine, and reflect. You might find yourself at the beginning of a healing journey.
