'When we do talk about [chronic illness] and normalize it, it’s not only empowering but shifts the narrative.”
, representation and community can be lacking. But that’s what these chronic illness influencers are trying to change with their content. By sharing the highs and lows of being young and sick, they’re sending other young, sick people a clear message: You’re not alone.
Paula never thought she’d be a TikTok star but when she ended up with an ostomy bag as a teenager, her mom urged her to make a video about it — what Paula calls a “silly little TikTok” — and the video quickly ballooned to 20,000 views. The comments filled with people sharing about their own ostomy bags and Crohn’s disease experiences. And Paula had a moment of illumination: Maybe this was her chance to share her journey and to make sure no one felt as alone as she had.
On her page, she answers questions about having sex with an ostomy and how to dress with the bag. “Nobody wants to talk about. It’s very stigmatized and people think it’s gross,” Paula said. “I’m happy to be that girl that shines the light on living with an ostomy so people aren’t ashamed.” She shares her life to create a community for other chronically ill people but also to educate able-bodied people on what it’s like to live with a chronic illness.
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.”
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