What It’s Like to Live With Parosmia and Anosmia
There’s something about a global pandemic and lengthy at-home lockdown that seems to intensify the need for an after-work cocktail. In April, I considered a bottle of Cazadores blanco a pantry staple. Cracking ice into a rocks glass with a shot of tequila, soda water, and a squeeze of lime or two was the occasional, after-work break I needed from hitting refresh on the The New York Times website over and over again. But for a few weeks, the drink tasted like nothing. A cold collection of bubbles that was relaxing in its effervescence but wholly devoid of flavor. The smell was empty, too. I came down with COVID-19 in early March. I was lucky to have a mild case that put me out of commission for a few weeks but needed no hospitalization. The strangest symptom for me was the complete loss of smell, something called anosmia (and later, parosmia). At the time, smell loss was newly linked to COVID; now, it’s a more reliable predictor of infection than a PCR test. It happened very suddenly.
One morning, I could smell; that evening, I could not. I was sitting in bed, drinking ginger lemon tea and hitting refresh repeatedly on the news. A story popped up about anosmia in European novel coronavirus cases and, suddenly, I realized the tea I was drinking was nothing more than scentless, tasteless, warm water. My nose was clear, but my brain registered nothing. I leaned over to my boyfriend, who had been embracing his new work-from-home setup and had gotten more lax on showering. Nothing.
My inability to smell lingered long after I recovered from the other symptoms of the virus. The air inside my home had no comforting, discerning scents. No fragrances of morning coffee, fresh laundry, or anything at all. It made cooking challenging (how spicy could it be, really?), but cleaning out my cat’s litter box was a breeze. I immediately became aware of something that had never crossed my mind before: My ability to smell my surroundings was far from guaranteed. Initially, I worried daily that maybe my sense to smell was gone forever. I felt weirdly alone without it—separated from a perception of my environment I’d always taken for granted. Thankfully, by the end of April, I started to taste the tartness of lime in my tequila sodas again, soon followed by the subtle presence of agave.
Bit by bit, it came slowly back. By early May, I could smell most things around me, though not as intensely as before. Eating was enjoyable again. I wasn’t permanently changed, but my anosmia had gotten markedly better. But then, during the third week of May, I took one sip of a freshly made drink and forcibly spit it out onto the counter before I could make it to the sink. Tequila. Soda water. Lime. But what I tasted was a forgotten pile of vegetables left way too long in the fridge— like rotten zucchini had been muddled into the beverage. A putrid, ripe smell emanating from the glass caught my nose and I gagged, dumping the tequila down the sink.
Suddenly, many previously normal smells—in particular, smells I loved—were rancid. A geranium-scented hand soap in the kitchen smelled like rotten squash. Taking a shower was an exercise in sensory futility between fragrant shampoos and facewash. I had to hold my breath in order not to gag walking through the produce section of the grocery store. Most fruits—from strawberries to pineapple, oranges to bananas—were completely inedible as they tasted as terrible as they smelled. I had to stop eating cucumbers, tortilla chips, eggs, and olives—among many other things. One of the most crushing blows: when pizza tasted so awful I had to hold my breath to get down a single bite.
This sounds ridiculous, I know. The idea that a piece of pepperoni pizza could taste rotten when it’s most definitely not, sounds crazy. It sounds made up. And it sounds like something that shouldn’t be a big deal because it’s not life-threating. I was otherwise okay; everything around me just made me gag. It wasn’t until I discovered AbScent, a UK-based non-profit dedicated to promoting awareness of smell disorders and offering support for sufferers, that I even learned what was happening to me. Experts refer to the distortion of smell as parosmia. Chrissi Kelly, who grew up in Maine but has lived in England for the past three decades, founded AbScent after her own experience with anosmia that began in 2012. “It’s very, very difficult to get people to understand just how awful it is to lose your sense of smell,” she told me. “It’s a very isolating experience. [Friends and family] think to themselves, ‘Well, I can plug my nose and I can see what that’s like and I just don’t get it. What’s the big deal?’ And the fact of the matter is that people who lose limbs, people who lose their eyesight, people who lose their hearing recover their well-being eventually, within about two years. People who lose their sense of smell tend to deteriorate over time.”
How COVID-19 Can Affect Your Sense of Smell
There are two ways viral infections can cause smell loss. The first is through mucus blockage—i.e. a stuffed-up nose—that prevents odors from reaching receptors in the upper part of the nasal passage. The second, which is generally more rare, is when the olfactory neuroepithelium—the tissue that lines the nose and contains the nerves that communicate scent to the brain—is damaged by the virus. “Basically, if the nerves are damaged, that can lead to a more profound loss of sense of smell,” explains Dr. Evan R. Reiter, professor of otolaryngology – head and neck surgery at Virginia Commonwealth University. While the research on smell loss and COVID-19 is of course, still evolving, studies have found that smell loss affects anywhere from 50-80 percent of individuals who contract the virus. That is not an insignificant amount. A recent study in Europe reinforced the distinctiveness of loss of smell and taste caused by SARS-CoV-2, sharing that while many people seem to recover quickly, there is reason to believe that problems with olfactory functioning will persist for some, long after they’ve otherwise recovered from the virus.
What Living With Anosmia and Parosmia Is Really Like
While far from a medical niche, smell and taste disorders exist outside of the general purview partly because of a lack of familiarity and partly because they just don’t seem as serious as issues with the other senses. This can make it confusing for those experiencing it, as well, gauging how to react or when to see a doctor. But, a lack of smell presents a set of real, life-affecting problems. Some scents alert us to possible danger: smoke from a fire, sulfur from a gas leak, even the smell of something burning on the stove. But even more, scent provides a way to connect with those around us. It provides comfort, familiarity and often nostalgia; it helps us to understand and interact with our environment in ways we really never consider until they disappear.
If anosmia is already an unfamiliar condition, then parosmia is even more so. With parosmia, the distortion usually happens with smells that are familiar. Generally pleasant scents are replaced with aggressively foul odors, like rotten vegetables or cigarette smoke. Parosmia renders food inedible and makes simple chores, like washing dishes, very challenging. How does it work? “In general, there are thousands of different receptors, all coded by different genes for olfactory neurons,” explains Dr. Reiter. “Most odors are relatively complex; they stimulate a whole bunch of different types of sensors. Your brain gets input from all these different receptors, then puts all that together to determine, this is a rose, this is my husband, this is dog poop. With parosmia, when there’s damage from any source, potentially all of the neurons and sensors are not affected the same, so instead of getting the signals from all of these different receptors, which the brain is used to, it’s maybe only getting signals from 25 or 50 percent—and when it puts that together, it changes the nature of what you’re smelling.”
What this means is that I dread brushing my teeth because the toothpaste tastes like it’s spoiled. A squeeze of lime in a cocktail—previously a nice way to wind down after work—is enough reason to pour my drink down the drain. For me, five months out from having COVID-19, parosmia affects every aspect of my daily life in a savagely smelly way.
How COVID-19 Could Help Experts Raise Awareness Around Olfactory Disorders
The nature of COVID-19 offers a unique opportunity to learn more about smell disorders in ways that can help people in the future. In early April, Dr. Reiter, who is also the medical director of the VCU Smell and Taste Clinic, launched a study with his team to understand more about the loss of these senses. “More often than not, when people experience changes in their sense of smell due to a virus, they will come in months or even years after their viral infection, simply because it hasn’t gotten better and they’re curious about that. You can also reason there are probably a lot of people who don’t seek medical attention or get tested.” This has made it challenging to research olfactory disorders, and in this way, COVID-19 presents opportunity. “Here we are with a highly publicized pandemic and the lay community is very aware that loss of sense of smell can be a hallmark symptom, so we’ve got all these people who are going through it together. We took the opportunity to try and study the natural history because that really hasn’t been possible [previously] with the way patients present so sporadically and so after-the-fact.”
This is hopeful. And in the meantime, the ranks of AbScent members continue to swell. In March, Kelly launched a COVID-specific parosmia support group on Facebook. Currently, there are more than 5,000 members who all describe similar experiences: coffee tastes terrible; gin seems to be the only liquor that isn’t wretched; rotten, smokey, and chemical smells and tastes abound. Everyone feels alienated because their experience is so unrelatable and sounds so ridiculous to their friends and family. Everyone finds solace in the experiences of other group members. Not one person has reported that the parosmia has ended and their sense of smell is completely back to normal. But it’s still early. The longest stretches of anosmia and parosmia date back to March; smell disorders can resolve—but it often takes months or years. And with every post shared in the group and every bit of information gathered by AbScent and shared with researchers (with permission, of course), the future of helping those suffering from smell disorders gets brighter. In a group that thrives on shared experience, this is definitely meaningful.
The best hope currently, as COVID-related anosmics and parosmics patiently wait for more scientific findings to emerge, is something called smell training, which is essentially physical therapy for the neural pathways between brain and nose. “The olfactory neurons are somewhat unique in the nervous system, in that they have the capacity to regenerate,” says Dr. Reiter. “What can happen in some cases is as the neurons regenerate, the wiring may get crossed, if you will, and people get a distortion.” Smell training is the repeated exercising of these neural pathways to help them recover properly, whether someone has no smell, or one that seems to be misfiring. It is the only research-backed technique that’s shown symptomatic improvement for smell disorders.
And it’s a process. “We have to think about this olfactory nerve as an injury rather than a disease that can be cured,” says Kelly. “If you got into a car accident and you looked at yourself in the mirror and saw that you were covered in scars, you wouldn’t say, when are my scars going to go away.”
There are success stories within the olfactory community. Chrissi, herself, is one. And her experiences resonate within the ranks of AbScent members suffering from anosmia and parosmia. I smell train every day. I take out a collection of small glass jars that contain different essential oils in various scent categories: orange and lemon for fruit, rose for floral, eucalyptus for resin, and clove for spice. For about 10 seconds each, I smell them individually. I focus on how they smell, how they’re supposed to smell, and I imagine being able to eat anything I want in the future, with no fear of an unexpected, rotten flavor. A few days ago, as I was brushing my teeth before bed, the toothpaste tasted utterly, completely normal. It’s been five months since I originally lost my sense of smell, and every small win makes me more hopeful.
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