When Your Terminal Illness Makes You a TikTok Star
After being diagnosed with A.L.S. in 2022, Brooke Eby could have turned inward. Instead, she opened up — and found a fan base online.
Brooke Eby did not intend to be back here at 36, living with her parents in the suburban home where she grew up — a traditional-style house in Potomac, Md., with ceramic plates on the wall and the family cat yowling from the kitchen. But by last summer, it became clear that living alone was no longer safe. Getting in and out of bed had become challenging. One day, after a fall, she was stuck on the bathroom floor until her dog walker arrived. Eby’s arms had a new heaviness to them, too — the same sensation she’d felt in her legs before losing the ability to walk.
On TikTok and Instagram, she asked her more than 350,000 followers if any of them had moved back in with their parents, and for a pep talk. “I need reinforcement,” she said, and then, in a higher, playful pitch, “Help me.”
For most of her life, Eby kept a low profile online, once deleting Instagram from her phone entirely because she didn’t want the distraction. But since being diagnosed with A.L.S., or amyotrophic lateral sclerosis, in 2022, Eby has joined a niche group of content creators with terminal illnesses documenting the progression of their diseases on social media. She considers herself more video diarist than influencer: Rather than Eby hawking vitamins or skin creams, most of her posts take viewers along as she shares health updates and otherwise shows the reality of living in a body that no longer functions as it used to. On the rare occasions she has posted paid content, it has been for companies such as a clothing brand that makes styles for people with disabilities and the National Funeral Directors Association. In one video, she joked about mainstream influencers receiving a new line of Louis Vuitton bags, and her receiving a new line of Depends.
