COVID-19 took their sense of smell. Will they get it back?
Diminished or distorted smells, tastes can last months after testing positive for virus
Peter Simpson was settling down on the couch with a glass of wine one evening last September when he suddenly realized something was missing.
"I noticed I had no sense of smell whatsoever," recalled Simpson, 59.
He grabbed a can of Febreze and sprayed it into the air. He could feel the droplets raining down on his hand, but there was no scent.
The previous weekend, Simpson and his wife Jenn Campbell had attended an outdoor dinner event at the National Arts Centre with another couple. One of their friends called a couple days later to say he'd tested positive for COVID-19, and advised them to get tested, too.
Our sense of smell is really part of our well-being, and people are just waking up to that fact now.- Chrissi Kelly, AbScent
Simpson and Campbell also tested positive.
While his other symptoms cleared up after about a week, now, nearly nine months later, Simpson's sense of smell remains unreliable at best.
"I can smell something one day, and then not for the next week," he said. "Some things just smell so overwhelmingly strong that it gets literally nauseating."
Simpson is among a growing number of people around the world who experienced a lost or diminished sense of smell, or anosmia, immediately after contracting COVID-19. Months later, many — 43 per cent, according to one U.K. study — also develop parosmia, a condition that can make familiar smells suddenly seem repulsive.
For some — about one in 10, according to the U.K.-based charity AbScent — the condition persists, and medical science has been unable to provide them with a clear prognosis.
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Because the two senses are so inextricably linked, many who have experienced parosmia have also experienced a distorted sense of taste. Simpson is among them.
"Something might have no taste, or just tastes wrong. I know it's not supposed to taste like this," he said. "I wouldn't say there's anything that tastes normal."
Last weekend, Simpson, a former Ottawa Citizen arts editor who has written about food and reviewed restaurants at home and abroad, prepared one of his favourite dishes for Campbell and a guest: sous vide steelhead trout with olive oil, salt and pepper.
"I took one bite of it and reflexively spat it out," he said. "It tasted like dirt, like musty dust or dirt kind of taste. But two other people were eating the same piece of fish and loved it."
'An alien smell'
Stephen Smith, who contracted COVID-19 in the early days of the pandemic, knows what it's like to live with that kind of unpredictability at the dinner table.
"I don't know what I can safely eat because some days some things will taste OK, and then other days they just don't," he said. "Like peppers, green or red peppers in a salad — sometimes they're safe, other days I just can't eat them."
Smith, 50, grew up in Ottawa and now lives in Montreal where he works in that city's video gaming industry. A former CBC journalist, Smith shared a candid account of his experience in December.
Like Simpson, Smith first lost his sense of smell altogether. About three months later, it began to return, but familiar scents like soap suddenly seemed different.
"Like it was coming back, but it was wrong," Smith recalled. "It's really hard to describe because it's a smell you've never really smelled before. It's like an alien smell."
Around the same time, some of Smith's favourite foods began tasting foul.
"The first thing I really noticed was peanut butter … just one day it tasted like mould," he said.
Perhaps the cruellest aspect of his condition is that Smith's true sense of smell will intermittently return, as it did one morning last winter when there was bacon cooking in the kitchen, only to disappear again.
"There's those little victories, but then it could be gone again just like that," he said.
The recovery question
While there's plenty of scientific research being conducted into the link between COVID-19 and anosmia/parosmia, there are very few concrete answers, especially to the key question haunting Simpson, Smith and countless others: When will they recover?
"The sense of smell is still a mystery. There's a Nobel Prize out there for the person who finally puts the pieces together," said Chrissi Kelly, founder and CEO of AbScent, a U.K.-based charity that provides support and information for people with olfactory disorders.
The organization's Facebook group for COVID-19-related smell loss now has about 29,000 members.
"Their first question is, 'When am I going to be 100 per cent recovered?'" Kelly said.
Kelly, who first lost her own sense of smell to a serious sinus infection in 2012, then again after contracting COVID-19, is working with the University of Reading to research what it is about certain foods that provokes the "disgust response" in some people.
"We're making some really interesting progress on that," she said.
Kelly warns the answer to the recovery question will take time, however, as researchers scramble to figure out why the signals between nose and brain are misfiring, and how it's all connected to the virus that causes COVID-19.
"The problem with scientific research is you've got to collect the data points, you've got to put them together, crunch the data, write the paper, put it through the peer-review process, and that's becoming ever more lengthy," she said. "All that just takes an excruciating amount of time."
Agonizing wait for answers
That wait for answers can be agonizing for people like Simpson and Smith, Kelly said.
"There's almost two things going on for these people: there's the smell loss, and then there's the anxiety about the smell loss, and they don't see that as two different things, they just see that as one great big awful thing that's sitting on top of their head."
In addition to the uncertainty and anxiety, some sufferers say losing their senses of smell and taste has meant losing an integral part of who they are.
"Before the pandemic, we'd have people over for dinner every weekend," said Simpson. "It is part of my identity, and that takes some adjustment."
"Our sense of smell is really part of our well-being, and people are just waking up to that fact now," Kelly said.
"The real story of the misery of smell loss is about sense of self, it's about relationships, it's about people and place and the passing of the seasons and the social experience of food, the sitting down together, the enjoyment. In fact, to lose your sense of smell is to not experience pleasure."
An emotional loss
Kelly said many parosmia sufferers also feel alienated because they have trouble describing their condition to others.
"These are not real smells that we're smelling. What we are experiencing is a sort of miswiring, a garbled message that our nose is sending to our brain, so naturally there's no way of describing that," she said.
There's a fundamental link between smell and taste, and memory and emotion, and that's something else parosmia sufferers have lost, Kelly said. For Smith, it's about the unique smell of home when he walks in the door, the aroma of fresh croissants wafting from the bakeries in his Saint-Henri neighbourhood, or the scent of his six-year-old daughter's hair after a bath.
"It removes that dimension from life, which is a dimension you probably take for granted until it's gone," he said.
Still, there's hope. Kelly said olfactory training, which she compares to physiotherapy or post-stroke rehabilitation, can be an effective recovery method, but only for those who stick with it.
"I think in a year from now a lot of the people who are suffering will have recovered, or will have recovered enough to have regained their quality of life," she said. "There will be a very small percentage of people who don't recover, but I think that's a very, very small percentage."