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CHAMPAIGN — Scarlett O’Hara remembers the last meal that tasted right. A quesadilla she made on New Year’s Eve 2020.

The University of Illinois senior had contracted COVID-19 after a family gathering on Christmas Eve, a week prior. Knowing it was time to quarantine, O’Hara photographed her creation and captioned it for Snapchat.

“I was like, ‘my last meal before I can’t taste anything,’ as a joke,” O’Hara said. “And the next day, I woke up, no sensation whatsoever. Taste, smell, completely gone.”

This wasn’t the typical blockage that comes with a stuffy nose. This was anosmia, basically blindness in the nostrils. Two of her senses went silent for two months.

When some foods began triggering a smell response in late February, O’Hara briefly rejoiced. Until she made a visit to her favorite fast-food joint.

“I take the first bite of this Chipotle bowl, and it tastes absolutely rotten,” O’Hara said. She gave it to her roommate, who thought it was good. Really good.

“She said, ‘I don’t go here much, but I could sit down and eat this whole thing.’”

For the last eight months, O’Hara has been one of millions of COVID-19 survivors left with parosmia — a widespread distortion of taste and smell. It took her a few weeks to find the word for her disorder.

Despite the condition’s prevalence — one June 2021 survey of 1,300 COVID-19 patients found 10.8 percent of respondents developed parosmia, with about half of them reporting it lasting for more than three months — there is no known cure.

And those afflicted are dealing with a condition they say is frustrating, even debilitating, but equally difficult to describe or complain about.

O’Hara’s best analogy for the disorder goes like this: If taste and smell are a palette, the entire color spectrum has changed for her. After two months of “complete gray,” practically everything she experiences through her nose or tongue is like a new hue she’s never seen before.

“Imagine when you have that new range of colors, they all suck, they’re all ugly, disturbing hues, that might even scare you,” she said. “And you just want to see pink again.”

Some things O’Hara used to eat every day to sustain her vegetarian diet, like eggs, suddenly tasted awful when the condition first set in. She used to hold back gags passing food trucks, cooking meat that smelled to her “like rotting, burning flesh, and sewage, and every heinous thing you can imagine.”

“Of course, I’m as lucky to not have ended up in the hospital or not have died from COVID,” O’Hara said. “There’s that conflicted guilt when I couldn’t eat my favorite meals anymore, crying when I would have to cut out a new food I didn’t want to cut out.”

One of the relatively few researchers who’ve studied the phenomenon is Duika L. Burges Watson, a lecturer of Medical Sciences at Newcastle University in the U.K.

From March to September of 2020, Burges Watson and her team of researchers studied thousands of entries in a “Covid-19 Smell and Taste Loss” Facebook support group, moderated by AbScent, a charity for people with smell disorders.

The virtual group had 1,000 members pre-COVID-19; now, more than 30,000 users have joined.

Researchers found several trends in their stories. Weight loss from food disgust, or weight gain from the lack of satisfaction eating brought. Difficulties in fragrant social situations, like accompanying friends at cafes and restaurants.

Even revilement at the natural smell of long-term partners.

More than anything, group members felt isolation and a lack of understanding. There’s the challenge of communicating an experience that is by its nature, indescribable. And since this wasn’t death or hospitalization from the virus, many listeners felt their sensory afflictions were dismissed.

“With smell and taste, until you lose it, you don’t realize how awful it is,” Burges Watson said. “It’s like someone puts up a sheet glass in front of you; suddenly, the lovely smell of soil after rain, the smell of your child, of your dog, all the sorts of things that indicate your place in the world are just gone or mixed up.

“It can be very destabilizing.”

‘More miss than hit’

More than a year after developing post-COVID-19 parosmia, Liv Dickinson has found some ways to manage her condition.

It’s just an unusual problem to have when Dickinson, a junior at the U of I, has worked tables at local tavern Seven Saints since March of 2021.

If you can’t smell or taste properly, what do you say when a customer asks about an item on the menu?

“They’ll ask me about recommendations,” Dickinson said. “And I can’t give them an actual answer, because I’ve never been able to actually know what it tastes like.”

She’ll compile the feedback she’s heard from coworkers, or default to a “sure, it’s good.”

When Dickinson first began to recover her sense of smell, she completely lost her sweet tooth. Chocolate, strawberries, cookies, chips, fruits, coffee — all her favorites, suddenly distorted.

“It’s so frustrating, because I never know what is going to taste good to me, and trying new things is so hit or miss,” Dickinson said. “Lately, it’s more miss than hit.”

She gets by with a lot of classic carbs: pasta, pizza, “bread-type things.” Sweet potato fries, but not regular fries, for some reason.

O’Hara’s tastes are a bit more specific. Cheese and mild dairies. Sweet, cold things like ice cream. Cinnamon, vanilla and coconut.

“I’ve never been much of a picky eater, but now everything has to have such a specific ratio, such a specific organization, or it could just taste bad for no reason,” she said.

Breakfast is usually vanilla yogurt with coconut, and some almonds, which she can tolerate.

For lunch, one of her snickerdoodle meal replacement shakes, or her favorite sandwich: toast, cream cheese, honey, spinach and avocados. And red pepper flakes.

“The cheese cancels out the bread, the honey cancels out spinach, and avocado is neutral. Then some heat from red pepper flakes cancels out anything else that tastes bad,” O’Hara said.

A certain brand of cheese tortellini, and a marinara sauce with no onion or garlic, is a classic dinner. With a bunch more cheese, butter and red chili flakes, it’s almost good, she said.

Like typical college students, they’ve found ways to survive. But it’s hard to say what will happen if their taste doesn’t improve months or years from now.

“Definitely the most frustrating part of all of this is still, 10 months in, the only things that bring me the same satisfaction or joy of eating are so bad for me, and I know that, and I can’t do anything about it,” O’Hara said.

They’ve each given time to some public Facebook support groups. Dickinson found success with the COVID-19 Anosmia and Parosmia Support page, now with more than 38,000 members.

“For the longest time, I didn’t know of anyone else who had such severe symptoms as me, who understood what I was going through,” she said.

O’Hara’s experience was different. Seeing stories of weight fluctuations similar to hers — she’s gained and lost about 15 pounds three times since contracting the virus — or stories of finding a partner’s scent disgusting, “was just upsetting,” she said.

“We’re all expected to adapt to this collective new normal, but I have my own little space that’s so bizarre and so unlike other people around me, that it still feels isolating,” O’Hara said.

Current research

Dr. Nathan Ackerman focuses on otolaryngology at Christie Clinic’s Fields Department of Ear, Nose and Throat.

He sees someone dealing with long-term smell dysfunction post-COVID-19 every couple weeks, he said, but Ackerman suspects that’s “just the tip of the iceberg.”

“Unfortunately, part of why not a lot of people seek care is there are not a lot of very reliable options for treatment,” Ackerman said.

Some studies on nasal steroids for COVID-19-related smell loss have been done, but none of them showed a significant benefit, Ackerman said.

Smell retraining therapy is the common no-risk, low-success rate option parosmia patients have at their disposal. The practice involves smelling strong-scented objects, namely lemon, clove, rose and eucalyptus, while trying to visualize how the smell “feels in the brain.”

“It’s a little tricky, because the further out we get from their initial infection, the less likely the smell retraining is to succeed,” Ackerman said.

The dominant theory is that COVID-19 infects the sustentacular cells that support the detection of smell, not the olfactory neurons themselves. The infection causes downstream injury to the olfactory neurons, but since it’s not direct infection, researchers theorize that’s why many sufferers recover within two weeks from the sensory loss, he said.

“We think parosmia is a sign of the nerves regenerating, a sign of their recovery, not a sign of their destruction,” Burges Watson said. “But it’s still difficult to live with.”

O’Hara has the same smell retraining kit in her apartment. “I didn’t get much from it,” she said.

The “weirdest, most bizarre part” through all of this for the UI senior is that she’s forgotten what some of her favorite foods tasted like before the virus completely altered her senses.

“For the life of me, if I sit here and try to imagine the experience of eating a piece of garlic bread, it’s replaced with the smell and taste of rotten, nasty COVID garlic, and I don’t know how that happens,” O’Hara said.

“If we go back to the color analogy, it’s like I forgot pink.”

‘It is real’

Nearly two years after the first cases of COVID-19 began popping up around the globe, researchers are wondering: should media and public health messaging have focused less on virus deaths?

“There’s been this tendency to look at COVID in terms of mortality. That’s what the media has reported all along, and people with long COVID-19 have been screaming ‘Why aren’t you talking about our experience?’” Burges Watson said.

A more recent issue for those suffering from smell and taste loss after infection is whether their stories could be used to persuade people to get vaccinated.

O’Hara’s taste side effects pushed several people in her personal circle to get a COVID-19 vaccine. But she wouldn’t want to sit down with a group of anti-vaccine proponents and share her story.

“I would fear they’d think I’m being dramatic, and that’s my weak spot,” she said.

“I don’t need someone telling me it’s not real, because it is real, and I know that it affects my life in dramatic ways that I can’t control, as hard as I try.”

She fears she’s dealing with more long-term damage that COVID-19 may have caused. She used her inhaler “probably twice a year” pre-COVID-19; it became once or twice every day in the months after infection.

A month ago, she fainted three separate times coming back to her campus apartment after taking her dog out, at first right outside the building doors.

“I remember staring at my phone. Everything was blurry and I’m trying to call my roommate, and I just can’t type anything,” she said. “I thought: Am I having a stroke?”

She fainted again walking up the stairs to her second-floor apartment. O’Hara finally got to her room a few minutes later, looking ghostly white, her roommate said, before passing out one last time in her roommate’s arms.

O’Hara stayed overnight in the emergency room. Doctors stapled the back of her head, which had gashed on the second fall. The CT scan looked fine, but her blood pressure kept dropping, befuddling the doctors.

O’Hara, 22, still visits the doctor every week for checkups and is set to see a pulmonologist soon.

“Any effort we make to explain to people that COVID is not just a disease of death, but of disability, is going to be helpful, because I think people look at a death rate (and) raw percentages don’t look that high,” Ackerman said.

“We really need to talk about what the other long-term health effects are, because not everybody who’s recovering is recovering well.”

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