My Rare Chronic Illness Is Now Viral On TikTok

Mollie, 25, lives with a condition that causes a racing heart, palpitations, intense fatigue, fainting, and brain fog. It reduces her ability to stand or walk for a prolonged period and prevents her from exercising and doing other day-to-day activities. It was only after a decade of living with these symptoms that doctors took her seriously and diagnosed her condition. Mollie has PoTS, or postural orthostatic tachycardia syndrome, and her experience is not unusual. According to Lesley Kavi, MD, a retired GP and trustee and chair of PoTS UK, the average time between symptom onset and being diagnosed with PoTS is seven years.

PoTS is an abnormality of the functioning of the autonomic (or involuntary) nervous system. It can cause a variety of symptoms and can range in severity. And it can fundamentally affect a person’s life. 

Allie, 19, tells Refinery29 she feels constantly dizzy and breathless, even after doing simple things like climbing the stairs. She finds it difficult to keep up with her university workload. Friends often don’t understand. "It’s very much seen as in your head," she says. Tash, 19, is also a student and has been experiencing symptoms for six years. "It has such a big impact on people’s lives," she says. Today, she spends a great deal of time doing "medical stuff" and "on the phone to people." "I don’t think anyone understands the amount of admin that comes with having a chronic illness," she says.

Mollie works part-time as an influencer and first heard about PoTS on TikTok. "I literally had no idea what it was," she says, "and my friend sent me a video of this girl. She was like, 'Oh my God, this is you!'" The girl in the video was Kirby, a 26-year-old actor and social media influencer based in California. She had been using TikTok to share her symptoms: "My heart rate was elevated most of the time, I felt so sluggish, I felt so ill." PoTS is diagnosed when an adult’s heart rate increases by more than 30 beats per minute within 10 minutes of standing. In response to her videos, Kirby had hundreds of women reach out, all saying the same thing: "Have you been tested for PoTS?" She hadn’t heard of the condition but she started doing her own research: "All of the symptoms and all of the criteria matched up to me in the way I was feeling." 

Mollie and Kirby both benefited from PoTS going viral on TikTok, where there are millions of videos of young women talking about their symptoms and experiences. Gregory Plotnikoff, MD, MTS, FACP, is on the medical board of the organization Standing Up To POTS and specializes in "complex, chronic, mysterious illness." He says that social media can be powerful and calls the prevalence of PoTS information online a kind of "citizen science," a "very powerful new thing."

But social media isn’t just helpful to those in need of a diagnosis; it also offers people with chronic illness a sense of community. "I don’t want to be dramatic," says Kirby, "but TikTok changed my life. Going through something medical, it is so lovely to feel like you have a support system." This online community is especially crucial because it is too often lacking in more traditional medical circles. President and founder of Standing Up To POTS, Cathy L. Pederson, says: "This is a community that has struggled for decades to have anyone recognize that we’re even here."

For 10 years, Mollie heard "there’s nothing wrong" from her doctors. She was repeatedly told that she was "probably just anxious" or "you’re a vegetarian, you just need to eat more meat." "This has been such a long journey," she says. "It feels like women just have to put up and shut up." Her situation is not unique. Like Mollie, Tash repeatedly went to her GP only to be "fobbed off with other stuff." Doctors suggested she might have an iron deficiency or anxiety: "One tried to send me to a psychologist and I was like, 'No thank you.'" 

While PoTS can affect people of any age and gender, the condition is up to four times more common in women. The reasons for this aren’t yet totally clear but according to Dr. Kavi, it could either be down to hormones like oestrogen or because many cases of PoTS stem from problems with patients’ immune systems. Autoimmune conditions are — for various hormonal and chromosomal reasons — more common in women.  

Systemic sexism in medicine is well documented and impacts all sorts of long-term conditions that predominantly affect women, including endometriosis and chronic urinary tract infections. With PoTS, this sexism combines with a widespread lack of understanding of the condition among doctors. In 2015, Dr. Kavi conducted a poll of UK GPs and found that only 10% had heard of PoTS. According to PoTS UK, 85% of patients are told that it’s "all in their head."

There is something potentially problematic about turning a condition into a trend. In the case of PoTS, its symptoms could be signs of many different conditions, making misdiagnosis all too possible. PoTS going viral also might be counterproductive for people actually living with this life-altering medical condition. On social media, views and comments are currency and, as Allie puts it: "Sometimes you see it when people feel like they have to compete to be the sickest." Tash is also skeptical. "The more extreme the content, the more views you’re going to get," she says, "and if my symptoms aren’t so severe, then I feel like it’s not real, like I’m making it up, like people have it worse and I should be happy." Also, while social media can play a positive role in the diagnosis of PoTS, everyone featured in this article says that they didn’t self-diagnose — their condition was ultimately confirmed by a medical expert. Self-diagnosis has a bad reputation and the prevalence of self-identified PoTS patients on social media risks delegitimizing the condition as a whole. 

These concerns are valid but so are the experiences of women who have found vital support, community, and information about their condition online. As Kirby says: "If I can talk about something and it helps just one person, then I could change somebody’s life. I felt like I was going crazy but, through TikTok, I can make someone else feel like they’re not going crazy."

Social media creators hold doctors to account, democratize medical information, destigmatize ill health, advocate for better support for people with chronic illness, and — partly because so many doctors are now on social media themselves — could educate healthcare professionals about under-studied conditions and elevate the patient voice.

For some people with chronic illness, finally finding a name for your condition might be helpful but effective treatment can remain elusive. The situation with PoTS is slightly different. Although there is currently no cure for PoTS, there are good treatment options available. Indeed, one of the most frustrating things about the difficulty of getting a PoTS diagnosis is that once you have one, the condition can be relatively well managed. Since their diagnoses, medication has hugely improved Mollie’s quality of life and Kirby has been able to manage her symptoms effectively through diet and lifestyle changes. 

While Mollie says her medication has "made such a difference — it’s been really good,' she’s frustrated that it took so long to get the support she needed from doctors. "It upsets me," she says, "because I think if I had got that appointment five years ago, I could have been put on the medication five years ago, and I could have felt better a long, long time ago."