How TikTok users with terminal illness are demystifying death

In a TikTok video on August 25th, Kassidy Pierson, who had been using the platform to document her life with terminal cancer, told followers she was hopeful it would be a good day. She spent the previous one nauseous, sweating and lethargic. But she was better on this day, and remarked how lovely the weather felt, and how she wished others could feel it, too. She told her followers she wouldn’t be posting every day. That wasn’t realistic anymore, she said. 

The video was Pierson’s last. On September 9th, Pierson’s older sister Kasey Metzger posted from her account telling her more than 200,000 followers that the 27-year-old had died.

“I can’t tell you the amount of times that she would just break down crying because she couldn’t believe how many people just loved her from this platform,” Metzger said. “Thank you so much for all that you’ve done for her.”

Pierson, who was diagnosed with melanoma six years ago, used her popularity to raise awareness about skin cancer, but her earnestness, her quirkiness and her vulnerability made her account more than advocacy. Pierson, whose username was @ohhkayypee, offered a window into what it looks like to die – the grief and regret, the insistence that life isn’t over until it is.

She posted intimate videos – of the tumors protruding from her small frame, on her decision to enter hospice, on how she talked to her son Hunter, 8, about the inevitability ahead. In the process, she developed a captive community that watched with curiosity and awe as she lived the final days of her life. 

But is it therapy?

People want to be seen – in life and in death. The short-form video app TikTok offers users an unexpectedly intimate space to navigate and narrate experiences with terminal illness, which grief experts say offers myriad benefits to people on both sides of the screen. The hashtag #terminalillness has nearly 40 million views on the app.

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Like Pierson, many TikTok accounts are offering a raw look at dying, the way its nearness clarifies the preciousness of life. Many encourage followers to take care of their health. Some accounts are intimate, others more humorous.

User @solelenaq shared her perspective on appreciating each day: “If I don’t make it I just want to say, ‘live your life.'” User @kora_the_herbivora shared a video of how overwhelmed she became by something that before her cancer diagnosis may have gone unmarked – the sensation of warm sun on her skin. User @pheovsfabulous posted a video about how she spent her life’s savings when she was given a year to live, only to outlive the prognosis.

Pierson’s mother, TK Dunn, said she’s glad her daughter uncloaked her own experience with death, especially how ambigious it can be. Pierson never really knew how much time she had left. 

“There was this roller coaster of, ‘Am I going to die now? What does that mean? Who do I turn to?'” Dunn said. “Our culture doesn’t normalize conversations about death. Death happens. We act like it doesn’t. If we can start demystifying it, maybe these events wouldn’t be so jarring or traumatic.”

‘One of the biggest ways people matter is through personal connection’

The Internet may be making death visible again, but it also offers something to the dying – the ability to connect. To matter widely. 

“One of the biggest ways people matter is through personal connection,” Rutledge said.

Research shows people with strong social connections may live longer, healthier lives. Conversely, people who are isolated face a 50% greater risk of early death.

“The ability to connect with people – to have that level of feedback and that level of support can be very positive emotionally,” Rutledge said.

The desire for connection goes both ways. Pierson’s audience was likely captivated because they craved connection, too, Rutledge said. And Pierson gave them that – often telling followers how grateful she was for their support, how much they meant to her.

“If the person who’s going through this, the person who’s dying, is thanking you for your attention and your participation in their journey, then you’re establishing … a parasocial connection in the sense that these people don’t know each other but become emotionally invested, just like you would with any narrative.”

These narratives also offer people fearful of death an alternative to the most terrifying story they tell themselves about how they would cope. Everyone makes up stories, consciously or not, about what they might do when death is imminent.

“You wonder how you would deal with your erasure,” Rutledge said. 

‘It psychologically feels like it prepares us’

Kessler said he believes every fear we have connects back to a fear of death. But that fear isn’t productive. Fear doesn’t stop death, he said. It stops life. 

Terminal patients deserve death with dignity. New Mexico aid-in-dying law sets standard.

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