Once upon a time, TikTok was just a quirky little app, essentially a place to learn trendy dances. But that has changed, and dramatically so: The social media platform is now a massive hub of information—with one billion monthly users worldwide, including 170 million in the US alone. Anyone and everyone can find content that appeals to their interests, whether they’re an anime fanatic, pottery pundit, passionate foodie, or holiday decor fiend. And one group in particular has found the app to be downright life-changing: people with chronic illness.
SELF spoke to nearly a dozen people in the chronic illness community about the impact that TikTok has had on their lives, and their responses were overwhelmingly positive. For so long, they felt alone on their medical journey, dealing with back-to-back misdiagnoses, crushing test results, unsupportive family members, or less-than-helpful doctors. But now, with just a swipe, they can connect with people—both folks who have their same condition and others who don’t—in ways that make those bumps in the road just a little more bearable. Some people told us they even found health care professionals who could actually help them thanks to other creators; others said they met their best friends who, finally, just get it.
Yet they were all a bit uneasy about one thing politicians have been dangling above our heads for some time now: a TikTok ban. In April, President Biden signed a bill into law that gives ByteDance, the Chinese company that owns TikTok, nine months to a year to sell its app or it will be banned in the US. The government says it’s concerned that ByteDance could share American TikTok users’ private data like locations and private messages with the Chinese government and spread propaganda to undermine the US. However, as far as national security is concerned, critics argue that TikTok’s privacy risks are on par with American-owned companies like Facebook or Google. TikTok is doing everything it can to block the bill entirely. In May, the company sued the US government, claiming the bill violates free speech rights; the Justice Department filed a brief in July arguing that that’s not true. All to say: It remains to be seen what will happen or when a ban might go into effect.
Below, three people with chronic illnesses share how TikTok has changed their lives for the better, and what a potential ban could mean for them and their communities.
“I gaslit myself into thinking I was crazy, but TikTok opened my eyes.”
Emma Maxwell’s endometriosis symptoms started when she got her first period at age 13, but it took seven years to actually get a diagnosis, which is pretty much the norm for people with this condition. (Endometriosis is a disease that occurs when tissue similar to the inner lining of the uterus grows outside of it and can cause severe pain, internal bleeding, constipation, infertility, and more.) The 25-year-old recalls health care providers and the adults in her life trying to convince her nothing was wrong, that she was being “overdramatic,” or that she just couldn’t handle pain.
She joined TikTok shortly after her diagnosis to turn it into a medical diary of sorts. “It was a place for me to document what I was going through because I was gaslighting myself into thinking I was crazy…. TikTok is what has opened my eyes more than anything,” Maxwell, who lives in Portland, Oregon, tells SELF. “It honestly wasn’t until I started to see others in the chronic illness community posting about their experiences when it finally clicked that I’m not alone and this isn’t normal.”
Courtesy of @heatherelliephoto
Now, she posts content with the goal of helping others understand that they, too, are not alone—and the payoff has been extraordinary. She frequently runs into people at her pelvic floor therapy sessions who say they found the facility because of her TikToks, and after recommending her surgeon online, she has learned that people fly across the country to receive their care in the hopes they, too, can find relief.
Maxwell admits that she often thinks about a potential TikTok ban and the ways it could reverse the progress that’s been made in disability awareness and education. “It could be detrimental for those of us who can’t necessarily live life the way society wants us to,” Maxwell says. “There are other platforms out there, but there isn’t anything like TikTok.”
“I finally feel more financially stable.”
Becky Lyons, 27, of Washington, used to work as a site director for a day care until her postural orthostatic tachycardia syndrome (also known as POTS) became too debilitating and unpredictable to manage. She was able to cope with her dizziness, nausea, fatigue, and blurry vision for about five years until a bout of COVID made it all worse in 2022. “I loved working with kids, but my body didn’t allow me to be active with them and I had to call out a lot,” Lyons tells SELF. “It was heartbreaking for me and even with accommodations, it was too much.”
After she quit her job in August last year, Lyons picked up some DoorDash shifts (when she had the energy) and made TikToks about life with a chronic illness while she was waiting for orders. To her surprise, she quickly gained a following and was able to join the platform’s Creator Rewards Program, which pays people based on how much engagement their content gets.
Courtesy of Josiah Lyons
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.”
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.”
Related:
- How to Make New Friends as an Adult When You Have a Chronic Illness
- What to Do If Your Chronic Illness Is Taking a Toll on Your Mental Health
- How to Deal If You Have a Chronic Illness and Your Friends Just Don’t Get It
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