#DeathTok is Actually Full of Life

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It’s late at night and the moon is sending a slice of silver through the window where—contrary to my sleep specialist’s recommendations—I am using my phone in bed. On the screen, a young white woman with short, messy brown hair and a hoodie dances laconically to DJ Casper’s “Funky (Cha Cha Slide Sped Up).” A text overlay reads: “Never had the s3x talk but did recently have a talk about where my money will go when I die (25 w/ stage IV cancer).” The pairing of peppy music with a serious topic is jarring. It’s also classic TikTok, marrying the tragic and the absurd to the meme of the moment.

It’s even more jarring when you know this: The video popped up on my For You Page (FYP)—an infamously algorithmically-driven recommended firehose of content on TikTok that greets users upon opening the app—in March of 2025. But the creator, Kasey Altman, died in 2022, just five months after she posted that video. I didn’t have to search for Altman: TikTok knew that I wanted to see her.

Altman was a member of #DeathTok, which includes dead and dying people such as Altman, Leah Amberly, and Amanda Tam as well as members of the good death movement, death doulas, hospice nurses, funeral directors, and more. #DeathTok is one among myriad micro communities that’s arisen on the short-form video social network (e.g. #BookTok and #HorseTok), with members taking advantage of hashtags to build community and make their content easier to find. Participants under the tag take death out of the shadows and into the light of the FYP. The death and dying community on TikTok is incredibly diverse, spanning a range of vibes from lighthearted to somber, cheeky and mischievous to more straightforwardly informative.

Historically, conversations about death and dying are led by people who are not themselves dying: priests and funeral directors, doctors and hospice nurses, family members of dying people. Altman’s slice of #DeathTok is proudly by and for dying people, who invite observation and conversation while tightly holding space for themselves. Dying people talking about their personal experience stand out in online culture, even as death and dying are beginning to feature in the mainstream more often. That’s why I fell in love with this digital space when I initially joined the app three years ago and the FYP served up a dying person communicating about death on their own terms.

Dying to Do it for Ourselves

The ability to post their own content in online spaces has allowed dying people to seize control of their stories, something they’ve long been denied, with people often speaking over and around them. The barriers to entry in online spaces are so low that anyone with access to a computer or smartphone can start publishing in minutes—a perfect arrangement for someone with limited time and energy, which dying people often are. What started in the 1990s with hand-coded personal websites for tech-savvy and determined people with terminal diagnoses evolved into blogs where dying people tapped into the online journaling medium in the 2000s, following by the flowering of social media environments in the 2010s that brought on modes of direct interaction and engagement as we entered the app era.

TikTok in particular creates a sense of intimacy, almost like FaceTiming a friend while you putter around the kitchen. This dynamic lends itself particularly well to conversations about death, with two features in particular facilitating close communications designed to be seen by millions.

One is the duet function, which allows creators to post themselves in a side-by-side style with the content they are interacting with, actively engaging with the original creator. It’s similar to quoting someone on text-based social media apps, and then commenting on the quote. TikTok’s version allows for a simultaneous and interactive format, the kind only possible through video. Sometimes, that original creator is themselves in the past, offering an evolving reflection upon the dying person’s journey. Across TikTok, users leverage the duet function in a myriad of ways, many quite delightful and charming. For example, musicians will engage in duet chains to develop layered videos bringing people from all over the world together, as seen to spectacular effect during the app’s sea shanty phase. On #DeathTok, the feature is often used to show progress in someone’s death journey.

But the duet can also be used as a political and informational tool, as in the case of a duet from @chronicallyhelpful14 where the creator messes around quietly alongside a video from @the_incurable_optimist talking about her experience as a young person with a terminal diagnosis and the misconceptions people have about hospice care. “Seriously, please everyone who sees this video, LISTEN,” an overlaid caption declares. If you do listen, you’ll be surprised to hear a young person who has been in hospice care for almost 20 years, dispelling the idea that hospice care always results in death. By dueting the original video, a creator ensures those views and conversations show up for their own followers, spreading messages ranging from information about the genocide in Palestine to the news of another creator’s death.

TikTok also allows users to “stitch” another poster’s video, where the first few seconds or minutes of an original video plays, and then the stitching creator jumps in with their own thoughts. The format allows creators to hop back and forth between the original video and their own responses. On #DeathTok, that often means building on what someone else is saying, like reframing the “terminal” language in relation to death, arguing that “terminal” is just a term used by doctors to mean they’ve exhausted medical treatment options and it shouldn’t mean the dying person has limitations around how to live.

Sometimes the asynchronous conversations on #DeathTok include creators who have already died, yet live on as ghosts as long as their accounts remain up.

These features ensure that the videos in a given TikTok community are in dynamic conversation with each other, departing from the static content delivery methods of YouTube, where longer-form content is king and creators don’t interact with each other directly, alongside would-be competitors such as Instagram’s Reels. While quote posting is not a feature exclusive to TikTok, the video format gives it a very different feel than quoted text. There is something about seeing and hearing the poster, witnessing their real homes and pets in the background, that feels more like looking into someone else’s world.

For dying people, that world often includes the accoutrements of death, such as hospital beds, medical supplies, and the other debris that gather around us in our final days, making the video feel more urgent. These functionalities have been built into the core functions of the app, encouraging users to engage with each other through these intimate and immersive conversations that engage the senses, turning the viewer into a voyeur of death. Encouraging users to share and remix each other’s content is also designed to push content and conversation far beyond its original sphere. This comes with pluses, such as introducing people to new topics in death and dying, as well as minuses, such as influxes of trolls who don’t understand a creator’s history or the nuances of the dead and dying community.

The result is not just an assemblage of content about dying, but an interconnected web of conversation that is oddly both real-time, with more creators constantly posting, and asynchronous, with creators interacting over time and at their own pace. Sometimes this includes creators who have already died, yet live on as ghosts as long as their accounts remain up. It’s also an invitation to die differently, and on your own terms. In an era of short attention spans and a preference for sound bites, short-form video is a high-impact, effective mode of communicating on social media. And it works well on #DeathTok, with creators continually adapting their content to take advantage of new memes, trending sounds, and video styles to the topic at hand. Smash that like button!

These short videos can also pack in a lot of information and ideas, allowing people to quickly cut to the chase with questions about advance directives and what foods you can tolerate on chemo. ALS icon Brooke Eby is an example of a terminally ill creator who has found a balance between informative, frank, funny, sharp, and also vulnerable. In an interview for the Endless Thread podcast, she noted the utilitarian value of offering life tips in a short-form video, providing dying people with information they need for things like managing pain, having conversations with caregivers, or using tools to accommodate the needs of changing bodies. “I don’t want to watch a whole sad documentary just to try to glean insights of how to do things when I could just make a two-minute video.”

Still, TikTok as a platform has its pitfalls for the #DeathTok community. The platform is quick to punish people who are “too graphic” when they discuss sensitive topics, which can put a significant thumb on the scale when it comes to how people on TikTok communicate about dying or “unaliving.” Creators must sometimes use algospeak euphemisms for the topic, or skate around specifics, in the hopes of not being reported and taken down or demonetized. There is a fascinating tension between driving important and challenging conversations about death and trying to avoid running afoul of a prohibitive and mysterious algorithm, a constant, looming reminder that dying people are always subject to pressures to die “the right way.” The #DeathTok space itself isn’t as racially diverse as it should be, with glaring gaps in content for communities who vitally need it. Many creators are white, with young white women capturing a particularly large share of the audience and the attention.

TikTok has a long-established history of Black creators of viral trends and memes not receiving credit or recognition for their work; #DeathTok is not exempt from hopping on trends with complex backstories. The community has also gone through controversies involving staged terminal illnesses, something that drives false accusations of “illness fakers,” now their own cottage industry on the internet. And as anyone who followed the Lauren the Mortician saga knows, #DeathTok can be as drama-filled as anywhere else on the internet. (Lauren, a creator presenting herself as a mortician, racked up attention and views only to be unmasked as less qualified than she presented. Upon being exposed, she then unsuccessfully sued her critics for defamation.)

Coming to a Screen Near You

TikTok, an app that skews heavily toward a younger audience, also makes death content more accessible to a community historically shut out of conversations about death. Young people are not supposed to die, but of course they still tragically do, and they should have spaces to talk about that experience. Dying young can be isolating. Many support groups and resources cater to older dying people, and for younger dying people, the sense of being “too young to die” complicates the experience. Dying Zoomers and their loved ones can also feel underwhelmed by a lot of content targeting friends and families of dying people, which tends to be aimed at older generations with different values and approaches to life. #DeathTok provides a more accessible, relatable approach in a familiar format, from people who become beloved faces in the growing dead and dying community.

#DeathTok makes for compelling viewing for self-identified death nerds like me, but what makes it exciting is that it also resonates with people who have never thought about death before.

#DeathTok is messy, funny, heartbreaking, angry, practical, irreverent, and, yes, sometimes, inspiring. It’s where you find users talking about their decision to voluntarily stop eating and drinking (VSED), as well as people with advanced cancer holding funerals for their amputated arms. It’s where you see family members of a beloved dying creator announcing that they have, in fact, died. It’s where people with rare diseases find each other and swap practical tips and tricks. It’s where you witness people choosing medical aid in dying and talking about their “goodbye days.” It’s where you’ll watch posthumous videos from people who used TikTok to drive awareness of and conversations about death and dying. It’s also about human composting and casket candy. It makes for compelling viewing for self-identified death nerds like me, but what makes it exciting is that it also resonates with people who have never thought about death before.

#DeathTok is about content that defies social expectations about what dying should be, while also providing concrete peer support for dying people and their loved ones in a friendly, low-key way. Yes, there are doom and gloom videos with sad music, but there are also more lighthearted, gentle, human approaches to death and dying that almost feel like a quick, intimate conversation with a friend.

Finding Better Ways to Die

In the last year and a half, TikTok had a definitive role in conversations about Palestine. The app has become a cultural juggernaut, as it allowed users to rapidly access and share information about the genocide in Gaza and the West Bank, even radicalizing some users who weren’t previously aware of the bloody history of the region. The subsequent “TikTok ban,” passed by Congress in 2024 is currently still in limbo, as Donald Trump indicates he won’t direct the Department of Justice to enforce the bill. The ban would force TikTok to sell to a non-Chinese buyer to remain accessible in the U.S., and repeated workarounds to the ban demonstrate how afraid powerful politicians are of the cultural shifts at the fingertips of TikTok creators. The future of #DeathTok, as with the rest of the app, remains in question. Several buyers, including Amazon and OnlyFans, are circling the waters, but as of press time there is no clear news about a confirmed timeline or specifics of a sale.

On #DeathTok, shifting culture around dying and death also threatens the social order.

There’s a huge industry in telling people how and where to die, and how to feel about it. A casual glance at the “death and grief” section of Amazon shows a veritable avalanche of schlocky inspirational self-help that also represents a lively sales category for publishers. The status quo around death suggests that dying people are “warriors” who are “fighting” the inevitable, but demands they do so in a non-intrusive, non-confrontational, quiet kind of way. It’s as if it’s their job to serve as inspirational lessons for the people around them, rather than being viewed as whole human beings undergoing a unique life (death?) experience. The rage of people dying of preventable illnesses and injustice is not welcome. Conversations about racial inequalities in access to health care are not welcome. Expressions of grief and loss that deviate from a sanitized, whitewashed norm are not welcome. Confrontation of necropolitics and harsh conversations about whose lives have value are not welcome, as evidenced by the swift action on the part of Congress to block TikTok in response to conversations about the genocide in Gaza. Think more Mitch Albom and Atul Gawande, less Judith Butler and Achille Mbembe.

TikTok creators are not the first to suggest that perhaps there’s a better way: Death practitioners for centuries have pushed back on the idea that there is a “normal” death or course of mourning. The hospice movement, for example, was a radical reframing that put power into the hands of dying people, and the contemporary good death or death positivity movement similarly posits that death doesn’t have to be uniform or tidy. Their contributions represent a new wave of death conversation that’s making an impact even on people who are not currently on their death journey.

The faces of the dead and dying light up my face late into the night as I scroll, promising myself just one more video, or maybe one more after that. From them, I’ve learned so many things about the experience of dying in the immediate physical sense as well as the social one. I’ve also been driven to have conversations I’d been putting off, and been pushed to live anyway—even if the impact is as simple as protecting my kidneys by obeying the eponymous dictate of: Go! Piss! Girl!

This piece was edited by Nicole Froio and copyedited by Tina Vasquéz.