Sharing caregiving experiences helps people feel less alone, builds community, and strengthens the movement for better support and policy.
Caregiving is often a silent act of devotion—unseen, unacknowledged, and isolating. Millions of informal caregivers in the United States spend their time and energy supporting loved ones with age-related limitations, chronic illnesses, disabilities, or mental health challenges, often without pay or training. Their work sustains families, lightens the burden on health care systems, and contributes billions of dollars to the national economy, yet their struggles remain largely invisible. Sharing these stories not only sheds light on the emotional, physical, and financial challenges caregivers face daily but also transforms silence into connection, fosters community, and helps build a stronger care infrastructure.
Caregiving in the U.S. has reached a crisis point, with millions of Americans providing intensive support to loved ones while facing overwhelming responsibilities. According to AARP and the National Alliance for Caregiving (NAC), a staggering 63 million individuals in the U.S. support another adult or child with a disability or medical condition. The 59 million caregivers who support adults spend an astonishing 27 hours per week providing care. In addition to helping with activities of daily living—such as bathing, eating, and toileting—a growing number of caregivers are also responsible for complex medical and nursing tasks. However, most caregivers do not receive training, which makes these responsibilities even more challenging. Caregivers also commonly assist with household chores, transportation, administrative tasks, and care coordination.
The study also found that 70 percent of caregivers work, and 29 percent raise children while caring for older adults. Unfortunately, many also face financial hardships due to work disruptions and rising caregiving costs.
The immense emotional, physical, and financial strain of caregiving can contribute significantly to caregivers’ stress levels and feelings of depression, anger, anxiety, guilt, and grief, with some even experiencing post-traumatic stress disorder. Many caregivers also suffer adverse health effects, including sleep disorders, weight fluctuations, and body pains. Moreover, caregivers often withdraw socially due to time constraints and exhaustion, which can exacerbate their health issues. Due to this considerable strain, caregivers of people with long-term illnesses and disabilities may experience suicidal ideation, and tragically, some may act on it.
Despite society’s dependence on caregivers, public support remains fragmented. For instance, public assistance programs can be complex and difficult to navigate. In fact, some caregivers may be eligible for tax credits, stipends, caregiver coaching, or respite care, but such programs often have confusing eligibility requirements. They are also dominated by complex bureaucratic processes that leave caregivers feeling overwhelmed, often resulting in unclaimed benefits. Moreover, workplace protections are improving but remain insufficient and unequally distributed, with hourly workers having less access than salaried workers to benefits such as paid sick days, paid and unpaid family leave, flexible work hours, caregiver assistance programs, and telecommuting.
Alarmingly, while older adults are living longer than ever before, they are also facing significant health issues, driving a sharp increase in the demand for caregivers. Furthermore, AARP predicts a long-term trend where the number of adults over 65 will consistently exceed the number of children under 18. The number of prospective caregivers will also shrink, while the number of those needing care will continue to rise, further exacerbating the care crisis. The demand for care will be compounded by the fact that professional home care workers are inaccessible to most families due to labor shortages and the high costs of paid care.
Because caregivers lack public and systemic recognition, many have turned to storytelling to speak out, earn validation, and fight a system that treats caregiving as a personal burden rather than a societal responsibility.
Because the enormous pressures of caregiving often make it difficult for caregivers to keep their jobs, maintain friendships, and participate in recreational activities, many caregivers withdraw socially. However, sharing stories with other caregivers who can relate to and validate their emotional burden can help combat this isolation. Such storytelling can be done through writing, conversations, digital platforms, and support groups.
Moreover, according to narrative identity theory, people can discover purpose, meaning, and self-continuity by constructing internalized life stories that bridge their reconstructed past, perceived present, and envisioned future. By structuring experiences into coherent stories, caregivers can begin to make sense of them. They can also reframe their caregiving role by shifting their focus from burden to the meaningful aspects of care, such as personal growth and resilience. This reframing can help them process feelings like anger, sadness, and guilt, which may provide significant emotional relief.
Storytelling can also lead caregivers to experience an externalization of their narratives, which is the process by which distressing events become separate from the person’s identity. This can make it easier to cope with the burden and heal from grief.
One way to achieve healing through storytelling is to practice expressive writing, which involves writing deeply about difficult experiences. Many studies have shown that this type of writing can reduce anxiety, stress, and depression, while also improving physical health. Contextualizing experiences through such writing can empower caregivers to process painful events rather than suppress them.
Storytelling can also help caregivers reclaim and renegotiate their identities. According to role engulfment theory, people who have a specific, demanding role—such as caregivers—may become consumed by it. This can lead to a disruption in their sense of self if they start to define themselves solely by their caregiving role, which can result in burnout and reduced self-worth. However, storytelling can help caregivers see themselves beyond their care responsibilities: as people with histories, dreams, and relationships outside their caregiving role. This can help them preserve their sense of self and cope psychologically amid chaotic or overwhelming events.
Beyond individual coping, sharing stories has also led to the creation of caregiver communities. Social media platforms, online discussion forums, podcasts, and both online and in-person support groups have brought caregivers together, enabling them to connect and heal over common experiences while also sharing practical information.
In fact, a 2023 AARP article reported that the AARP Family Caregivers Discussion Group, which was launched on Facebook in 2019, helped prevent burnout and reduce stress among participants. It also provided members with a space to brainstorm ideas, share resources, seek validation, and offer one another emotional support. Moreover, a 2021 study showed that bereaved caregivers who shared their stories on Facebook with other caregivers by posting photos found social validation, experienced meaning-making, and had a decreased risk for prolonged grief disorder.
Sharing stories in such communities can enable caregivers to identify systemic issues, including a lack of support from employers, health care systems, and the government. This can contribute to collective meaning-making and awareness, which are instrumental in advancing the care movement.
Storytelling doesn’t only lead to healing and community; it can also be a force for cultural and policy reform. Although quantitative data is often used to convey key trends on caregiving, personal stories have the power to put faces to statistics, making it easier for people to emotionally connect with the information being shared. Stories, which are also much more memorable than statistics, have the power to illustrate the complexities of caregiving—the conflicting emotions, moral predicaments, and relational challenges—which statistics alone cannot.
Storytelling also counteracts the stigma around disability, illness, and caregiving. After all, care recipients are often subjected to negative stereotypes that depict them as pitiful, weak, or incompetent, instead of as inspirational beings with purposeful lives who are deserving of support, respect, and dignity.
There is also significant social stigma against caregivers. On one hand, they may be perceived as “unsung heroes.” Yet, their care efforts are commonly viewed as “not real work,” and they are therefore seen as undeserving of support and recognition. Caregiving is also commonly viewed as “women’s work” or associated with certain ethnic and cultural groups. Furthermore, caregivers who are employed are often perceived by their peers as less dependable and less committed to their careers. Sharing personal stories can combat such stigma and shift attitudes by humanizing and normalizing care while highlighting the unique challenges and remarkable resilience of both caregivers and their care recipients.
Moreover, stories that spotlight the emotional, physical, and financial strain associated with family caregiving and care work can reveal structural economic disparities, systemic failures in healthcare access, and flawed labor policies. As a result, the care movement uses storytelling not only to expose gaps in the care economy but to reconceptualize caregiving as essential labor and push for a reformed care infrastructure. Narratives are also a powerful tool for evoking compassion and understanding and rallying supporters.
A notable example of this approach to storytelling is the work of Ai-Jen Poo, one of the most well-known caregiver advocates in the U.S. As a leader of the nonprofits Caring Across Generations and National Domestic Workers Alliance, Poo has spent her career using stories to highlight the value of care and push for legislation that benefits the caregiving community.
For instance, she has pushed for investing in care infrastructure by passing progressive tax reform. She has also advocated for expanding Medicaid to include more home and community-based services. Furthermore, she has proposed implementing Universal Family Care, a social insurance model similar to Social Security, which would fund child care, long-term care, paid family and medical leave, and disability services.
Poo has advocated for such policy reform through grassroots campaigns, coalition efforts, media appearances, and Congressional hearings. In doing so, she has presented care stories as evidence of systemic challenges rooted in weak policies, labor issues, and cultural and social norms. This depiction of care stories turns storytelling into a galvanizing force that connects personal narratives to collective calls for policy change.
Many organizers, movement builders, and nonprofit advocacy groups use storytelling with the same purpose. For instance, following the 2018 passage of the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act, several nonprofits collaborated to develop a national, multi-sector strategy to support caregivers. To ensure the strategy’s recommendations would align with the diverse needs of the caregiving community, the federal Administration for Community Living worked with the NAC, the National Academy for State Health Policy, and Community Catalyst to collect and analyze caregiver stories. The narratives were gathered through public requests for information (RFIs), dedicated listening sessions, and interviews.
Overall, more than 1,600 caregivers and organizations responded to the RFIs, 150 organizations and 80 caregivers participated in listening sessions, and 26 caregivers shared their in-depth stories in interviews. The narratives—many of which centered on financial struggles, lack of support, the need for respite, and the frequency of burnout and depression—were compiled to develop the 2022 National Strategy to Support Family Caregivers. The strategy focuses on championing caregivers by expanding visibility and outreach, increasing services and resources, strengthening workplace policies, adopting more research-based practices, and recognizing caregivers as crucial members of healthcare teams.
The strategy mapped out 350 actions for federal agencies and 150 suggestions for states, local communities, and employers. The strategy is meant to be updated biennially based on caregiver needs.
Storytelling has played a significant role in the passage of many pieces of care legislation, helping to shed light on who caregivers are and how society should support them. In this way, storytelling is a powerful tool for inserting lived experience into theoretical discussions. Leaders like Poo have shown that care stories are central to policy reform, shaping political visions for a stronger care infrastructure.
One notable example of a caregiver who has made an impact through storytelling is Matt Cauli, a social media influencer who has shared his story in the PBS documentary Caregiving, made appearances on TV shows like Tamron Hall, and spoken at various panel discussions to advocate for caregivers.
In 2020, Matt became a caregiver for his wife, Kanlaya Cauli, when she suffered two strokes due to an undiagnosed form of ovarian cancer called clear cell carcinoma. The strokes caused brain damage and led to paralysis on the left side of her body. Matt has since been her primary caregiver, assisting with showering, eating, exercising, caring for wounds, and other activities of daily living. Because of the stressors of caregiving combined with the pressures of raising his and Kanlaya’s young son, Matt ultimately had to quit his job and become a full-time caregiver.
Once Matt started sharing his and Kanlaya’s story on TikTok and Instagram, his followers and online engagement soared. Although his content sometimes discusses the rewards of caregiving, including milestones in Kanlaya’s recovery, it more often highlights the emotional, physical, and financial toll on his family.
By recounting his experiences in an emotional and relatable way, Matt has increased public visibility of caregiving and used storytelling as a tool for informal advocacy. Specifically, he has called for government programs to be more accessible, advocated greater flexibility for working caregivers, and argued that home care should be more affordable. He has also spoken out against New York’s paid caregiver program because it excludes spouses and parents from qualifying as paid caregivers.
Matt’s social media pages have also become a safe space where other caregivers can find community and validation. His relatable posts have sparked passionate conversations among his followers about topics such as caregiver burden and the broken state of the American health care system. Followers often confide in each other about emotions like guilt, sadness, and resentment—feelings they may not feel comfortable discussing with non-caregivers. They frequently share their stories, offer each other advice, exchange resources, and empathize in ways only fellow caregivers can, because they understand each other’s pain firsthand.
Another example of a caregiver-turned-storyteller is Kate Washington, author of the critically acclaimed 2021 book Already Toast: Caregiving and Burnout in America, which offers a data-driven look at the invisibility of caregivers. She has also written articles for the New York Times and Time Magazine, and has recounted her story in various interviews and care podcasts.
Washington has shared her experience of unexpectedly becoming a caregiver for her husband, who was diagnosed with lymphoma and subsequently needed a stem-cell transplant that led to a severe infection, leaving him temporarily blind, immunocompromised, and too frail to walk on his own. As a result, he required intense, 24-hour home care, which consisted of 35 daily medications, intravenous nutrition, glucose tests, and help with toileting and bathing. The pressures of caregiving, in addition to working and raising her two daughters, soon led Washington to become burnt out and depressed.
In her book and personal essays, she calls for more structural support for caregivers, including tax credits, paid family and medical leave, and more access to home- and community-based long-term care and support resources. She also advocates for creating more jobs and work protections for home care workers.
Like Matt’s, her narrative resonates with caregivers, validates their experiences, and fosters a sense of community and recognition by rejecting the common “heroic” depiction of caregiving and instead disclosing the anguish, frustration, and sorrow associated with it. Because of her story’s relatability and honesty, her book has become a crucial voice for caregivers. It is commonly referenced as a resource for those seeking to transform policy on the care crisis.
Actor and filmmaker Seth Rogen and his wife, Lauren Miller Rogen, have also shared their caregiving story through various campaigns and multimedia projects. The Rogens became caregiver advocates after Lauren’s mother, Adele, was diagnosed with early-onset Alzheimer’s disease at the age of 55. She gradually forgot how to speak, feed herself, get dressed, and go to the bathroom on her own. When Lauren’s father—her primary caregiver—became burnt out, the family hired 24-hour professional care.
Inspired by their family’s caregiving experience, the Rogens started the nonprofit Hilarity for Charity in 2012. The organization shares Adele’s story and uses humor to humanize caregiving and raise awareness of Alzheimer’s disease. Storytelling is a critical part of their fundraising strategy, helping them raise millions of dollars through star-studded comedy events, peer-to-peer fundraising, digital campaigns, and corporate sponsorships. The funds have been allocated toward Alzheimer’s research and have granted hundreds of thousands of hours of paid in-home care to caregivers of people with Alzheimer’s and related dementias.
In 2014, Seth testified on Capitol Hill in Washington, D.C., before a Senate Appropriations Subcommittee. He shared Adele’s story and advocated for more federal funding and focus on Alzheimer’s disease. His testimony garnered significant public attention, prompting media coverage of the needs of caregivers and care recipients.
In 2021, the couple wrote an opinion piece for CNN announcing they had joined the Paid Leave Alliance for Dementia Caregivers. In the article, they advocated for paid family and medical leave. They called on Congress to provide more flexible workplace policies and greater financial support for caregivers who have had to leave their jobs or accept lower-income roles.
Moreover, the Rogens produced the critically acclaimed 2025 documentary Taking Care, which recounted Adele’s story, detailing the deterioration of her health until her passing in 2020. The purpose of the documentary is to reduce the stigma of the disease, raise visibility of the toll of caregiving, and advocate for policies that improve conditions for caregivers.
The Rogens have also created a community around caregiving by launching CareCon, a free, annual, virtual event that offers resources for caregivers. They also offer free, online caregiver support groups for those experiencing isolation. Moreover, they rally young people to unite and become advocates for care through their Youth Movement Against Alzheimer’s program.
Collectively, millions of caregivers like Matt, Washington, and the Rogens reshape public understanding of care and contribute to policy reform through their storytelling. At the movement level, leaders like Poo amplify these voices, using them to reframe care as essential and fight a system that devalues it. Together, the caregivers who share their stories and the movement leaders who spotlight them have become critical to the push for cultural, social, economic, and policy change.
Although some caregivers still use traditional storytelling methods, such as writing grief memoirs or self-help books, the evolution of digital technologies has enabled caregivers to quickly and conveniently share their stories across geographic barriers. This expansion of digital platforms has played a critical role in normalizing candid conversations about care and creating a cultural shift that values care as essential work.
For instance, caregivers are increasingly turning to social media platforms like TikTok, Instagram, Facebook, and YouTube. Many creators on these platforms use artificial intelligence to streamline content creation and produce relatable, meaningful narratives about the realities of caregiving. Online newsletters and blogs about caregiving are also growing in popularity, exposing the complexities of care while also fostering community.
Additionally, there has been a substantial move from in-person support groups to digital formats. These discussions may take place in Facebook groups or on video conferencing platforms like Zoom, providing caregivers with convenient ways to find validation, resources, and emotional support from home.
Furthermore, although some care advocacy organizations still host in-person gatherings, virtual events like CareCon and the Alzheimer’s Caregiver Summit are also on the rise. These events help raise awareness of systemic issues and enable guests to share solutions to the care crisis.
There has also been an increase in podcasts dedicated to caregiving. Some popular examples include the Happy Healthy Caregiver, The Caregiver Cup, and AARP’s Caring for Caregivers. These podcasts often invite legal experts, medical specialists, and caregivers to share their insights and champion stronger care policies.
Documentaries focusing on the care crisis, like Rogen’s Taking Care, are also gaining traction. One notable example is actor Bradley Cooper’s 2025 PBS documentary Caregiving, which explores the lives of informal and professional caregivers while calling for a shift in cultural attitudes and policy reform.
The proliferation of caregiver storytelling across various media has contributed to increased policy and academic conversations about the care economy, signaling a shift toward viewing caregiving as essential labor. As technology evolves and new trends emerge, these conversations and stories must continue to be amplified so they can shape a better, more equitable care system that serves everyone.
Despite their invaluable contributions to their families, communities, health care systems, and the national economy, caregivers continue to lack the support and recognition they deserve. Caregiver stories shine a light on this “invisible army,” exposing the profound emotional, physical, and financial burden caregivers grapple with daily.
These narratives can also reduce isolation, restore identity, build community, and improve care systems. Listening to and amplifying these stories can transform personal pain into collective strength and build a world where caregiving is viewed as crucial work, deserving of respect, dignity, and support. Progress will become increasingly vital as the U.S. enters an era marked by an unprecedented care gap, with the senior population outpacing the number of available caregivers.
So whether you’re a caregiver, advocate, or ally, consider sharing your story. The care movement can only grow stronger if we let the health care industry, lawmakers, employers, community members, and fellow caregivers hear our voices. By stepping into the light, you can inspire change and pave the way for a better future for all those who provide care.
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