Paula said it took “three months of nonstop sobbing” about the prospect of living the rest of her life with an ostomy bag to come to the place of acceptance and confidence that she has now reached, but her TikTok following has given her a purpose. “I felt like I lost my purpose entirely through chronic illness,” she said. “This really helps me know I do have a purpose.”
Across TikTok, Gigi Robinson shares about chronic illness, mental health, and body image to her 132,000 followers. Gigi, 24, started posting online about her illness in her sickest moments and the community she’s found has helped her heal. She doesn’t want to hide her illness — and she wants people to know where the urge to hide comes from. “It’s put in place by the ableist society we inherently live in,” Gigi said. “So when we do talk about it and normalize it, it’s not only empowering but shifts the narrative.”
And Gigi is shifting the narrative — she was recently the first openly chronically ill Sports Illustrated model. On her social media pages, she shares a full view of her life: As a chronically ill woman who is also a model and a grad student and a person always in pursuit. She posts TikToks from New York Fashion Week one day and a doctor’s office the next. “I’m allowed to do different things. I like to see my page as [one] of possibility for people with chronic illness.”
Like many other people, Dom Snyder, 26, spent the beginning of the pandemic messing around on TikTok. He posted a video of himself injecting insulin for his type-1 diabetes under the username @avgdiabetic. Two years later, he’s amassed almost 34,000 followers and though sharing his chronic illness with the world can feel wildly vulnerable, he says it’s worth it. “It’s more rewarding,” Dom said. “I have made connections that are lifelong and everlasting.”
Dom does TikTok trends through the lens of diabetes and his comments fill with people expressing the same sentiment: this happens to me, too. And that, he says, is the point. “Without a community, type-1 diabetes is a lot harder than it needs to be,” he said.
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