Chronic Illness Influencers on TikTok Are Showing the Reality of Being Sick

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When Paula Sojo was 19 years old, she spent six months in the hospital because of Crohn’s disease. By the end of the hospital stay, she got her first ostomy bag — a small pouch that collects waste that exits the body through a surgically created hole. Paula said she sat in the hospital among patients who were decades her senior and had the overwhelming feeling that she was the only teenage girl with an ostomy bag in the entire world. That feeling of isolation, Paula said, made her feel depressed and embarrassed and ashamed.

But that was a year ago. Now, Paula is 20 and she shares the details of living her life with an ostomy bag and two chronic illnesses with her 154,000 TikTok followers in the hopes that no one else feels as alone as she did in those moments in the hospital. In her videos, Paula is energetic and open, sharing clips from her sister’s wedding (and the fact that she almost fainted during photos thanks to her diagnosis of POTS) and answering questions about living with an ostomy bag. Can she swim with it? Yes. Can she party, despite her illnesses? Yes. Does she sometimes have flares of her illness that make her feel unproductive and sad? Yes. And has she come to the point of acceptance where she’s stopped trying to hide her ostomy bag? Absolutely yes.

Living with a chronic illness can be isolating (an estimated one-third of people living with serious chronic illness experience depression, according to the Cleveland Clinic) and that isolation can deepen when you’re experiencing illness in your youth. Although an estimated 20 to 30% of young people have a chronic illness, 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 poop. 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. She’s gotten comments from people saying they had no idea what an ostomy was until she educated them. “And that feels one step closer to ostomies being [perceived] like glasses – just a medical device that helps people out,” she said.

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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