Peter Simpson was resting on the sofa with a glass of wine one evening last September when he suddenly realized something was missing.
“I noticed I had absolutely no sense of smell,” Simpson, 59, recalls.
Grab a can of Febreze and spray it in the air. He could feel the drops running down his hand, but there was no smell.
The previous weekend, Simpson and his wife Jane Campbell attended an outdoor dinner at the National Center for the Arts with another couple. A friend of theirs called two days later to tell them he tested positive for COVID-19, and advised them to get tested as well.
Our sense of smell is really a part of our well-being, and people are now waking up to that fact.– Chrissy Kelly, Absent
Simpson and Campbell’s tests also tested positive.
While his other symptoms faded after about a week, now, nearly nine months later, Simpson’s sense of smell is still unreliable at best.
“I can smell something one day, then I won’t smell it next week,” he said. “Some things smell so strong that they literally become disgusting.”
Simpson is among a growing number of people around the world who have experienced a loss or diminished sense of smell, or a loss of their sense of smell, immediately after contracting COVID-19. After months, many – 43 percent, According to one UK study They also develop parsima, a condition that can suddenly make familiar smells seem disgusting.
For some – about one in 10, according to UK-based charity AbScent – the condition has persisted, and medical science has not been able to provide them with a clear outlook.
Because the two senses are closely related, many who had parosmia also experienced a distorted sense of taste. Simpson is among them.
“Something may tasteless, or taste wrong. I know it’s not supposed to taste like this,” he said. “I wouldn’t say there is anything that tastes natural.”
This past weekend, Simpson, a former Ottawa-based art editor who writes about food and reviews restaurants home and abroad, prepared one of his favorite dishes for Campbell and his guest: trout with olive oil, salt, and pepper.
“I took one bite of it and reflexively spit it out,” he said. “It tastes like dirt, like moldy dust or the taste of dirt. But two other people have been eating the same piece of fish and they love it.”
Stephen Smith, who contracted COVID-19 in the early days of the pandemic, knows what it’s like to live with this kind of unpredictability at the dinner table.
“I don’t know what I can eat safely because some things will taste good some days and then other days they don’t,” he said. “Like bell peppers or green or red peppers in a salad – sometimes it’s safe, other days I can’t eat it.”
Smith, 50, grew up in Ottawa and now lives in Montreal where he works in the video game industry in that city. Smith, a former CBC journalist, shared a candid description of his experience in December.
Like Simpson, Smith has completely lost his sense of smell. After about three months, it started coming back, but the familiar scents like soap suddenly seemed different.
“As if it was coming back, but it was wrong,” Smith recalls. “It’s really hard to describe because it’s a scent I’ve never smelled before. It’s like a weird scent.”
Around the same time, he started tasting some of Smith’s favorite foods.
“The first thing I really noticed was peanut butter…only one day it tasted like mold,” he said.
Perhaps the most gruesome aspect of his condition is that Smith’s true sense of smell will intermittently return, as happened one morning last winter when there was a bacon cooking in the kitchen, only to disappear again.
“There are those little victories, but then they can just go away again like that,” he said.
While there is a lot of scientific research being done on the link between COVID-19 and anosmia/parosmia, there are very few concrete answers, especially to the main question that haunts Simpson, Smith, and countless others: When will they recover?
said Chrissy Kelly, founder and CEO of AbScent, a UK-based charity that provides support and information for people with disabilities and olfactory disorders.
The organization’s Facebook group for COVID-19-related odor loss now has about 29,000 members.
“Their first question is: When will I recover 100 percent?” Kelly said.
Kelly, who first lost her sense of smell due to a serious sinus infection in 2012 and then again after contracting COVID-19, is working with the University of Reading to research some foods that trigger a “disgust response” in some people.
“We’re making some really interesting progress with that,” she said.
Kelly cautions that answering the recovery question will take some time, as researchers scramble to find out why the signals between the nose and brain are misaligned, and how it all relates to the virus that causes COVID-19.
“The problem with scientific research is that you have to collect data points, you have to put them together, solve the data, write the paper, and put it through a peer-review process, and it’s getting longer than ever,” she said. “It all takes time.”
Painful waiting for answers
Kelly said that waiting for answers can be painful for people like Simpson and Smith.
“There’s almost two things that happen to these people: there’s the loss of smell, and then there’s the worry about the loss of smell, and they don’t see it as two different things, they see it as one big, horrible thing sitting over their heads.”
In addition to uncertainty and anxiety, some sufferers say that losing their senses of smell and taste means losing an integral part of their identity.
“Before the pandemic, we had people for dinner every weekend,” Simpson said. “It’s part of my identity, and that requires some adjustment.”
“Our sense of smell is really a part of our well-being, and people are now waking up to that fact,” Kelly said.
“The real story of the misery of smell loss is about a sense of self. It’s about relationships, it’s about people, place, seasons, the social experience of food, sitting together, having fun. In fact, losing your sense of smell is not feeling pleasure.”
Kelly said that many people with parsomia also feel alienated because they find it difficult to describe their condition to others.
“These aren’t real scents we smell,” she said. “What we feel is some kind of miswiring, a garbled message that our nose sends to our brain, so naturally there’s no way to describe it.”
There’s an essential link between smell and taste, memory and emotion, and that’s another thing that’s been missing from parasomia patients,” Kelly said. For Smith, it’s about the unique smell of the house when he walks in the door, or the smell of fresh croissants wafting from bakeries in the St. Henry neighborhood, or the smell of his six-year-old daughter’s hair after she takes a shower.
He said, “It removes this dimension of life, a dimension that you may take for granted until it is gone.”
There is still hope. Kelly said olfactory training, which she compares to physical therapy or rehabilitation after a stroke, can be an effective way to recover, but only for those who stick to it.
“I think within a year from now, a lot of people who are suffering will recover, or will recover enough to get their quality of life back,” 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.”