With the help from her 70,000 followers, Lyons makes $2,000–$4,000 a month, and is on track to earn even more in upcoming months. “I’m able to pay my bills and even pay for things I’ve been putting off, like going to the dentist,” Lyons says. Now “I have savings and a budget for fun money!” The stability has finally given Lyons the means to accomplish her goal: uplift others like her. “So many people don’t understand chronic illness, so if I can help create a more inclusive environment for those in the chronic illness community, I’m going to.”
But as politicians fiddle with a potential TikTok ban, chronically ill creators like Lyons who depend on the app to support themselves are left feeling incredibly uneasy. “I’m so thankful that I have the opportunity to make money and be flexible with my time and energy, but I’m not sure what I would do if TikTok was banned, as I finally feel more financially stable,” Lyons says. “TikTok is a huge part of my life. Without it, I really don’t know where I’d be.”
“I can show what it’s actually like to be chronically ill.”
When Nicole Pedra was diagnosed with multiple sclerosis (MS)—a central nervous system disease that affects the entire body, including cognition, movement and mood—at 10 years old, she didn’t have anyone or anything to lean on. After all, fewer than 5,000 children and teens live with the disease in the US at any given time. “I never met anybody who had similar experiences to me,” Pedra, 36, of California, tells SELF. “It was super isolating and depressing.”
But TikTok has completely changed the game for people—of every age—with chronic and rare diseases, she says. The app’s highly personalized algorithm and accessibility features like auto-generated captions make it easy to find others like you and connect around everyday struggles (and accomplishments!). “You know you have a chronic illness when your best friends are on the internet,” Pedra jokes.
Living with MS for 26 years now, Pedra recognizes how unique and valuable her insight is, so people on TikTok, including her more than 40,000 followers, often turn to her for advice on things like dating with MS or coping with extreme fatigue. Above all, though, her silly skits help dispel misconceptions and stigmas about chronic illness that people can then share with their loved ones who may not understand it all. “Storytelling is a powerful way for me to show what it’s actually like to be chronically ill.”
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For example, most people with MS won’t end up needing a wheelchair—they tend to use mobility aids more often, she says. Plus, “TikTok has totally made wheelchairs and canes cool now” thanks to creators like herself and clips of celebrities like Christina Applegate who frequently go viral on the app with tricked out and decorated mobility devices. But if TikTok is wiped from our devices, all that “visibility and awareness that allows us to break stigmas” would be lost.
“People commonly tell me that my page has given them hope and made them feel less alone, especially those who were recently diagnosed” with a disease, Pedra says. “So many on TikTok are just doing dances, but I feel like I’m really helping people.”
—for free.
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