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An illustration from the perspective of a person making a TikTok video. Their reflection, a close up of their eye, is seen on the screen of the smart phone recording the video in the center of the frame. Behind the phone is a ring light. Seen in the background of the image is a desk covered in medical supplies, including several pill bottles and an IV. There is also a vase of orange flowers. Xinmei Liu for Vox

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The complicated lives and deaths of TikTok’s illness influencers

A ‘day in the life’ at the end of a life

A.W. Ohlheiser is a senior technology reporter at Vox, writing about the impact of technology on humans and society. They have also covered online culture and misinformation at the Washington Post, Slate, and the Columbia Journalism Review, among other places. They have an MA in religious studies and journalism from NYU.

Madison Baloy began making TikTok videos at the beginning of the Covid lockdown because her very cute “weenie dog” Binks (as in Jar Jar) deserved an audience. But the real views — the brand deal views — came after her stage 4 cancer diagnosis earlier this year. With 7 million views, her breakout video was a “get ready with me” for the day she got her head tattoo, a depiction of the sun. Baloy has illustrations of two tarot cards, the sun and the moon, hanging above her bed.

Every tarot card has two meanings, which depend on how you’re looking at it. The sun, viewed upright, means contentment, good results for tough struggles, and vitality. Reversed, the sun’s warmth is blocked by clouds, instead symbolizing pessimism, difficult setbacks, and sadness. Baloy’s account, @fruitsnackmaddy, radiates both orientations. On it, she’s shared a makeup tutorial for her evening out at the club with her oncologist. She filmed her own PET scan. She talked about the severity of her anxiety while revealing her favorite product to keep her head moisturized: Renee’s Shea Souffle hair and scalp oil by Lush. (Lush later mailed her a package of free products.)

“Come spend the day with me,” Baloy says in a day-in-the-life video, “because I don’t know how many I have left.”

Baloy is just one of a cohort of creators with life-threatening illnesses sharing their lives with the world on TikTok. There’s also Erin Lennon, a 26-year-old with 312,000 followers who makes TikToks (including many poking fun at her own impending death) from her shockingly pink bedroom. Amanda Tam, a 23-year-old in Quebec with ALS, said that her account began as a joke but has quickly become an advocacy tool. Kasey Altman launched a podcast and research fund after documenting her life with a stage 4 rare sarcoma. Altman died in 2022. Her family now maintains her account.

The first video of Altman’s that I remember seeing is also one of her most viewed: a dark joke about getting diagnosed set to the sound of a playlist abruptly transitioning from Nirvana’s “Smells Like Teen Spirit” into “Sicko Mode” by Travis Scott — a popular TikTok meme. While some of her videos, that one included, feel like sly infiltrations into TikTok’s meme culture that grab your attention before delivering an unexpected punchline, Altman made others, about people with cancer and her “cancer friends.” Watching her account over time provided a carefully packaged glimpse of a personal experience with terminal illness.

Personal stories about serious illness are hardly uncommon. Yet the preeminent narrators of sickness and dying in America tend to be people and institutions that are not ill, Anita Hannig, an anthropologist and death educator whose research focuses on the cultural components of the medical system, told me. Before the 19th century, clergy and other religious figures spoke for and to the dying, issuing last rites, guiding the mourning, enforcing the standards required for a religious burial. A burgeoning funeral industry, and then the medical system, then picked up as primary narrators for the dying. Patient voices remain plentiful and important, but not nearly as influential on how we think about sickness and death.

Susan Sontag, recovering from grueling treatment for stage 4 breast cancer in 1978, wrote that “illness is not a metaphor.” She was trying to nullify the mythologies of illness as a spiritual test, divine justice, or a poetic coda to how a person’s life was lived. Illness is just illness, she argued. “Sick” and “healthy” are not personality types, and all of us will, at different times in our lives, be both.

When I started getting videos from seriously ill creators on my TikTok For You page, I let myself briefly think that I’d found something Sontag was looking for. If anything can be content, then maybe turning illness into social media posts flattens it within TikTok’s meme culture, rendering it just like anything else. If TikTok’s algorithms can create a custom deck of shuffled cards for each user, then sickness content is just one of the suits.

But these stories — whether held in an archive of personal letters, a widely discussed lecture, or on the For You pages of millions — are all shaped by the expectations of the “well.” Turning sickness into content can get views. And just like any content, not all people, or illnesses, have an equal chance of going viral.

The #BreastCancer hashtag on TikTok has 2.9 billion views. The fight against this illness has a marketing army and deep pockets. Meanwhile, #SickleCellAnemia, an inherited blood disease that is most common in Black people, has just 40 million views.

People often look for inspiration in the stories of strangers who are sick or dying, says Tonia Sutherland, an assistant professor of information studies at UCLA, whose work focuses on the intersections of memory, community, and technology. “We want to hold up those stories and narratives and be like, ‘Yes. That was a beautifully lived life,” she said. There’s a judgment there.

In reality, not every sick or dying person expresses themselves so predictably. At times, viewers seeking an ideal of a “dying person” in a terminally ill person’s TikToks can get angry when they instead find a human being. Some of the creators told me that when their content didn’t meet the expectations of how a sick person is supposed to be, they faced harassment and vitriol from strangers.

Krystal Lee, a 34-year-old with spinal muscular atrophy who posts to TikTok and Instagram as SuperGimpChick, said she has dealt with commenters trying to fat-shame her and criticize what she’s publicly shared about her end-of-life decisions. Baloy said she’s gotten pushback for swearing in her videos, a trait that some find unbecoming of someone with terminal cancer. One 2019 study suggests that GoFundMe campaigns for people with lung cancer actually do better if the pitch mentions that the beneficiary is a “non-smoker.”

Sometimes, even posting about illness can feel like a transgression. When Amanda Tam, the 23-year-old with ALS, posted what would become her breakout TikTok video, she was worried her doctor would see it and be mad at her. In the video, Tam dances to a popular TikTok sound called “My Happy Song,” with a caption that reads, “How my doctor thought I would react when she told me I’m dying but I still have to get a job and be an adult.”

Tam had nothing to worry about. Her ALS team saw the video on their own For You pages, and loved it.

“We valorize this idea of having a stiff upper lip and not complaining,” said Hannig, the anthropologist. Sick people are supposed to suffer in silence. Those who are dying of their illness, Sutherland noted, are held up as virtuous when they use their final moments to inspire others, so long as they fit the mold of the sort of person whose thoughts are considered worthy.

Shortly after her diagnosis with life-threatening synovial sarcoma, Natasha Allen told her mom that she was going to make a quick Instagram post letting people know she had cancer.

“I remember my mom being like, ‘Why do you have to tell people?’ That it should be more of a private struggle, I guess,” Allen told me. But sharing became a way to pull back the pressure of needing to present to the world a version of herself that wasn’t sick. “I need to be more open, to be more graceful to myself. That’s what I told my mom.”

Plus, finding ways to connect with people isn’t always easy when you’re young and living with an incurable cancer. Allen’s particular form of cancer was rare, particularly in younger people. So she couldn’t find people like her online talking about it. Her TikTok account now has nearly 150,000 followers.

“People have this view of someone being older. I’ve had a lot of people saying, ‘You don’t look sick,’” Allen said. People are also surprised when she mentions that she’s working full-time while going through treatment.

“Not everyone has the privilege to just be able to be sick,” she said.

This, I think, is one of the biggest disconnects between creators sharing their lives with serious illnesses and the outsiders gazing in through their algorithmic feeds: that sick people aren’t always just sick. Their status is not always immediately identifiable from a quick glance. Illness is a part of Allen’s identity these days. But it’s not always the main thing she has going on.

These divisions are also very visible in what I’ll call Disability TikTok. There are three groups of creators who tend to get views in this space: people who have a disability, people who are care partners or loved ones of people with a disability, and medical professionals who work in a related field. These different categories of creators can end up in tension with each other, especially when people who are not living with a disability become the louder voices speaking about it. For instance, dementia content is hugely popular on TikTok, and the overwhelming majority of it is posted by care partners of people who have dementia — for example, people who do not have cognitive decline — raising questions about the ethics of telling the story of someone who cannot consent to being filmed.

People with serious illnesses face their own version of this. Allen described the phenomenon of “cancer muggles,” an online term popular in some cancer support spaces for people who have not had cancer themselves but feel compelled to offer advice to those who do have it. Some will rattle off hopeful stories of someone they know who “beat” stage 4 cancer. (Which cancer, Allen often mentally replies.) Others hop in the comments of her posts recommending bogus miracle “cures,” like green smoothies and soursop, a fruiting tree with no proven benefits for cancer patients as a treatment. She does what she can to address these comments, debunking and adding context, to minimize the harm caused by this misinformation latching onto her posts.

The comments section is also where Allen makes some of the most meaningful connections. After wandering the halls at UCLA’s sarcoma oncology center, where everyone she saw looked older than her, she started spending more time on TikTok during her chemo sessions. And she found more people like her. They’d comment on her videos that they had cancer, too, that they remembered that thing about chemo. And they liked her jokes.

Allen has a self-described dark sense of humor. When she’d try to poke fun at her illness among friends, they’d tell her not to say it. “But then when I would do it online,” she said, “people were like, ‘My gosh, I feel it.’”

TikTok is a bunch of niche interests smashed together algorithmically, sometimes alongside the overlapping interests of other people. Getting TikTok views beyond a single niche requires knowing how to cross those borders. Baloy showed up on my For You page over the summer, thanks to a video where she rolled a 20-sided die to randomize her choices on a chemotherapy day, a video that bridged the boundaries between Dungeons & Dragons TikTok and cancer TikTok.

People like me are lurkers on the platform: Sure, I’ve posted about my ridiculously cute cats, but I do not have a following beyond my circle of preexisting friends. For me, the site is like a never-ending movie. But gain a degree of fame within a niche, and you’ll start finding your mutuals.

“Mutuals,” as it does on any social media site, means two people who follow each other’s accounts on the same platform. There can also be a deeper meaning to the relationship, one that goes beyond the transactional nature of follower and followed. For Baloy, her mutuals became a group chat of other young women with stage 4 cancer.

Allen’s first TikTok “cancer friend” left a comment on one of her videos, saying, “Hey, I also have a rare sarcoma,” Allen recalled. It was Kasey Altman, the TikToker I’d seen on my feed a couple of years ago. Altman was living in New York City at the time, working for Google. Allen, who was in LA going through treatment, had always wanted to move to New York. Before Altman messaged her, she’d even looked up which cancer center she’d go to for follow-ups in New York. Allen eventually made it happen, and she and Altman met up in New York. They talked. They understood each other. It felt nice.

Both were in remission when they met. Then Altman’s cancer came back, and then Allen’s did, too. When Altman died, Allen went to her Celebration of Life, where she met her friend’s parents and boyfriend. They all still check in from time to time.

Baloy, the TikToker with the sun tattoo, knows that, in many ways, she’s a highly marketable sick person. She’s young, white, educated, and knows what she’s doing on social media. Plus, she says, beauty companies love to get brand deals with people going through chemotherapy. So even though she didn’t start posting in order to get famous, she knew what would get views.

“To a degree, it’s following the formula, right?” she said. “I had something that was just a few degrees away from ‘normalcy.’ I had the relatability factor of conventionally attractive 25-year-old. Many people can see me and recognize themselves as that.” She also has little else to do these days, since she stopped working as a kindergarten teacher shortly after beginning treatment. Even so, maintaining a TikTok presence can amount to more than a hobby.

There are many immaterial reasons someone might become an influencer while dying or seriously ill. A number of creators told me they’d forged personal connections on TikTok and found an outlet for feelings that were difficult to express in their offline lives. But there are also material reasons to post. Being a good content creator and a marketable sick person can lead to financial support in addition to being heard.

Baloy, Allen, and Tam all have active GoFundMe campaigns to support their costly treatments, and those campaigns have benefited from the size of their social media presences. Allen’s family was on an HMO when she sought treatment for her rare cancer, but none of their local oncologists had treated that particular illness before. So she found a doctor at UCLA, which was not in her insurance company’s network. Her family had to pay out of pocket. The TikTok-fueled boost to her GoFundMe helps.

“If you’re going to be spotted by somebody who might be able to throw some cash your way, somebody who’s doing an experimental treatment, that kind of visibility is what could save your life,” said Sutherland.

A successful social media career could also allow you to set up your family with financial stability after you die. It could raise funds for research, and it can make a rare illness visible. But being a content creator, even for the “well,” is exhausting.

When Baloy and I spoke, she was preparing for another chemo day. She wanted to film her chemo but was in a bit of a content rut. Her working concept was “how to serve at chemo,” as in the drag queen version of “serving” an impeccable look on a runway. How-tos do well on TikTok, and that juxtaposition of “serving” and going to chemotherapy had an obvious dark humor to it.

She did not serve, I learned later that week when she texted me. “I put together a bunch of clips, and I felt super uninspired,” she said. Several days later, she posted a very different video. It was supposed to be a tutorial for pork fried rice, an easy video to promote her tongue-in-cheek reminder to “eat like shit,” because a lifetime of healthy eating didn’t prevent her from getting cancer.

She opens the video in tears. She woke up that morning bloated from the previous night’s dinner. She looked in the mirror and thought she looked pregnant. The thought reminded her that she couldn’t get pregnant because of, you guessed it, the cancer. Then she wanted to make a soup to cheer herself up, but the carrots she wanted to use were “limp.”

“People comment, ‘I don’t know how you handle this so well,’” she tells the camera. “I don’t! I don’t! I’ve been crying over these carrots for an hour. I know it’s not the carrots, but I don’t want to think about the stuff that’s actually making me cry.”

Then the video cuts back to the stove, where Baloy has regrouped, found some sausage and frozen vegetables, and is throwing together a fried rice dish. She throws the carrots in the trash, takes a bowl of food outside, and takes a bite.

Baloy smiles. “Cancer? I hardly know ’er.”

Correction, January 23, 10:30 am ET: A previous version of this story misstated the status of Allen’s illness: She is not terminally ill but rather has a type of cancer that can be managed but not cured.

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