Viral TikTok shows the reality of living with a long COVID symptom called parosmia

Natalia Cano can’t eat her favorite foods anymore — not hamburgers, french fries, or California rolls. She doesn’t enjoy most beverages, except Dr. Pepper, and even water is difficult to swallow. It’s not a new diet or temporary illness, but instead a debilitating reality that began after she got COVID-19 earlier this year. 

The twenty-year-old film student has an increasingly common post-COVID symptom that distorts her sense of smell so that most foods smell and taste like sewage, rotting garbage, or a scent that’s so unnatural she still can’t describe it after months of dealing with the condition. Known as parosmia, it can be caused by a variety of medical conditions, but since the start of the pandemic has been reported as one of many smell and taste problems associated with COVID.

In a now viral video posted to her TikTok account on Nov. 14, Cano documents an emotional breakdown over finding out her condition has a name. She’s replying to a video by another user, Ashley Zibetti, who also has parosmia and has to eat with a nose clip to tolerate the taste of food. Cano is crying, trying to explain to viewers how difficult her situation is. “I didn’t know this had a name,” she says. “I don’t think anyone understands how much this affects your daily life. It’s not that foods taste rotten — it is that, but it’s garbage, it’s sewage… Imagine the worst smell that you have ever smelled in your life and it’s that, but everything.”

Cano begs those watching to wear their masks, since the long-term symptoms of COVID-19, including its relation to parosmia, are still so unknown to patients who are suffering. “There’s no cure. There’s just hoping,” she says in the video. 

More than 13 million people have viewed that video, and 70,000 have flooded her comment section with a wide variety of advice, supportive comments, and (unfortunately) accusations that she’s just being dramatic, Cano told Mashable. “There’s just been a ton of unsolicited health advice…To me, it kind of goes to show how little information there is about this, and how people are just doing and saying and trying whatever to see what sticks,” she said. 

To appease some of her new 100,000 followers, she’s even tried some of the suggestions, like eating a burnt orange (didn’t work) or using smell training kits. While the latter hasn’t made much of a difference, she did learn that the smell of clove hasn’t changed, and that’s helped her find a few enjoyable foods and beverages that feature the spice, like chai, Dr. Pepper, and even BBQ sauce. 

A good portion of those comments are from people also suffering from the effects of sensory loss and parosmia after contracting COVID-19. She receives an overwhelming amount of personal messages every day. From the stories shared in her messages and comments, Cano said, it’s possible many viewers were discovering their experiences weren’t unique for the very first time, just like she had.

Tweet may have been deleted

Indeed, even after seeing multiple medical professionals, Cano hadn’t heard the term parosmia before stumbling upon Zibetti’s TikTok account, which then inspired her to do her own research. Cano had briefly lost her sense of smell when first sick, but didn’t consider the possibility of future parosmia. When her parosmia later emerged, she went to doctor after doctor, from emergency rooms to invasive procedures like colonoscopies and a gastric emptying test in order to test for what they thought could be an intestinal issue. She finally got some sort of answer after going to an ear, nose, and throat specialist, who connected her symptoms to her COVID diagnosis earlier in the year. She didn’t hear the term “parosmia” until that TikTok, however. 

Parosmia is a known and studied symptom in the medical field, caused by many different conditions like traumatic brain injuries, viral infections, or even cancer treatments. But treatment options vary, and it can’t always be fully cured. When it comes to parosmia in COVID cases, scientists are researching what causes it and how long it lasts, which varies from a few weeks to months.

New data published in November in the Journal of the American Medical Association (JAMA) estimates that at least 170,000 people are living with COVID-19 olfactory dysfunction (also known as COD), which is a general term for lost or distorted smell after a COVID-19 infection. And that’s just the lowest end of the estimate, which could be as high as 1.6 million people living with a damaged sense of smell and taste. As we reach the two year mark of the pandemic, medical institutions and researchers are devoting more research time to the long-term effects of COVID-19, a variety of conditions arising after COVID infection often referred to as long COVID or long hauler COVID. 

Younger people might feel less inclined to make a big deal out of it, because we’re aware of how many people are losing their lives because of COVID. And how much worse it could have really been.

Cano, for her part, described her and her family as extremely careful about COVID health protocols, but unfortunately still contracted it in January. She quarantined for two weeks and recovered soon after. Cano didn’t experience parosmia until a few months later, though, which seems to be common among the other people she’s spoken to. The symptoms emerged randomly, and she started noticing it when drinking the water from her college dorm room tap. Now, Cano can barely maintain a healthy weight. She says she’s lost 30 pounds, and has even passed out. 

“It is literally torture every single time I eat something, and I’m so terrified of food. I’ve never been a picky eater in my entire life,” Cano said. “I have zero food security, because it’s not even that I can’t find anything that tastes good to me. It’s that the taste itself also changes on a month to month basis.” At one point, she was throwing up bile every day and had excruciating stomach pains. Her mom now sends her care packages of Cliff bars, something high in protein that she can quickly get down, and she can eat a few, ever-changing safe foods. Currently, those include pulled pork and pineapple.

Cano’s battled chronic illnesses all her life, and says the reality of parosmia is just as bad as those past experiences. And it’s not just eating — she can’t tolerate the smell of her favorite beauty products or even brush her teeth without feeling overwhelmed, often wearing a mask to stifle scents in her own bedroom. Her favorite childhood smells, like fall leaves and fresh snow, have changed, too. “A lot of people take their masks off as they’re walking to class, because they don’t really need it, and I’ll have one or two masks on because the smell of fall air is garbage now — like even air smells bad,” Cano reflected.

Her symptoms are another harsh reality of COVID-19 — a part of the disease we don’t fully comprehend. These symptoms have physical repercussions, like Cano’s weight loss and malnourishment, but also a social impact. “Food is so central to almost every single social setting, social gathering. You don’t even realize it until you have something like this,” she said.

Still, she hopes the power and collective knowledge of the internet can help others. “Younger people might feel less inclined to make a big deal out of [these symptoms], because we’re aware of how many people are losing their lives because of COVID. And how much worse it could have really been,” Cano said. “I thought that I was completely alone on this. But there are so many people that were in the exact same position that I was in. I truly felt like no one understood what I was going through. I felt like I was an anomaly.”

She’s been told by her doctor that patients with post-COVID symptoms like hers usually recover within a year. But she’s creeping ever closer to that deadline. In the meantime, she’s visiting a taste and smell specialist in Washington, DC to try out a new treatment — and she plans to document her results on TikTok. 

Cano’s also finding community among others sharing their stories on the internet, and still asking people to continue taking COVID-19 and its variants seriously. “If my video, and people seeing how distraught and how horrible it is to live with this COVID side effect, if that’s something that makes them wear their mask more and be a bit more careful with COVID regulations — or even get their vaccine — that is great to me.”