When I was eight, I held my brother’s smelly sneaker over my nose for a full minute and inhaled deeply several times. That was the first time my family believed I had no sense of smell, despite years of my replying “I can’t smell it” each time they referenced a scent that was, to them, palpable—a bad stink on the highway, fresh flowers in the home, a skunk on our hike.
Who could blame them for being skeptical? Anosmia, defined as the inability to detect smells, is a rare disorder that hasn’t historically gotten a lot of airtime—that is, until 2020, when people began temporarily losing their sense of smell from COVID-19.
Pre-COVID, just 1%–2% of people in North America reported problems with their sense of smell, according to the National Institutes of Health, though this issue is more common in older adults. But over the last year, anosmia rose in notoriety as one of the hallmark symptoms of the coronavirus. In one small Clinical Infectious Diseases survey, a third of people with COVID-19 reported anosmia or ageusia (loss of taste), and it was particularly prevalent in women and younger or middle-aged patients. While many people with the coronavirus recover their sense of smell in two to three weeks, some are experiencing anosmia or parosmia (a distorted sense of smell) far longer than that.
Aside from the coronavirus, common causes of anosmia include sinus infections, head injury, smoking, nasal polyps, and exposure to chemicals. And then there are people like me, congenital anosmics, who were born with no sense of smell.
Over the years I’ve burnt countless meals, poisoned myself with spoiled food, worried about body odor, and babysat two toddlers for hours without realizing they had dirty diapers (the parents recoiled when they walked in the door). The minuses far outweigh any pluses. Anosmia can be a legitimate safety issue, and it can significantly impact not just your day-to-day life but also your mental health.
With so many people experiencing smell loss for the first time in the past year, I have collected advice from my fellow longtime anosmics about how to navigate a world your nose no longer knows.
1. Expect a range of emotions.
Anosmia is an invisible disorder that can completely upend everyday life. “The first thing they are going to realize is their surroundings no longer seem the same. You’ve lost a dimension of your world,” Pamela Dalton, Ph.D., an olfactory scientist at Monell Chemical Senses Center in Philadelphia, tells SELF. So don’t be surprised if this change takes a mental and emotional toll on you.
This was true for Katie Boateng, who lost her sense of smell due to an upper respiratory infection during her first year of college. Boateng tells SELF that she knew people might experience a loss of smell during a cold, but she had no idea it could be permanent. “I felt scared, alone, isolated,” says Boateng, founding member and president of STANA, the Smell and Taste Association of North America. “It’s a huge loss, and you do go through the grieving process.”
Boateng says she cycled through anger, depression, and then denial for several years. “Instead of tackling it head-on, I did my best not to pay attention to it. It was too painful.” Acceptance finally came after Boateng launched The Smell Podcast in 2018 to explore what she wished she’d known when she experienced smell loss.
2. Find support online.
Connecting with other anosmics can help you realize you’re not alone. “It makes people feel validated. They don’t feel weird, they don’t feel different. They don’t feel they are bellyaching or making it up—a lot of people get accused of that,” Chrissi Kelly, founder of AbScent, a nonprofit in the United Kingdom supporting people with smell disorders, tells SELF. Since losing her sense of smell in 2012, Kelly has offered support to fellow anosmics through AbScent with workshops, online events, and Facebook groups.
AbScent manages three moderated Facebook groups: one for people who became anosmic due to COVID-19 (with more than 23,000 members), a group for those experiencing parosmia (with more than 8,000 members), and its original group, now designated for people who have non-COVID anosmia (with more than 6,000 members). Because AbScent’s groups have a global membership, there is the added benefit that you can likely connect with someone at any hour.
Though virtual groups are great for support, online chatter isn’t always scientifically accurate, so finding reliable sources of information on the internet is crucial, says Boateng. Established organizations are the best place to start, including the National Institutes of Health, AbScent, the Global Consortium for Chemosensory Research, and the charity FifthSense.
3. Seek out professional mental health support if you can.
Losing your sense of smell can significantly impact your well-being. Anosmia can affect so many aspects of your life, including your work and your relationships. Don’t hesitate to seek mental health support if you’re able to and are having an understandably hard time.
“People have difficulty getting to grips with it because the condition is largely suffered in silence. It’s very difficult to describe and talk about, and others tend to dismiss it,” says Kelly. “But neurologically, other things are going on. Two mechanisms are at work: the bereavement of losing the sense of smell and the neurological changes.”
Research shows a correlation between olfactory functioning and depression, and it doesn’t seem to be purely related to changes in your quality of life due to a subpar sense of smell. One possible theory is that reduced input from the olfactory bulb affects the brain’s limbic system, which is responsible for emotions.
“The need for depression support after smell loss is becoming very apparent and very necessary,” Kelly says. “People need to recognize what’s going on, and people need to recognize this is not just a problem of the nose.”
If you’re not sure where to find professional support, you can start with this guide to searching for an accessible, affordable therapist. People you connect with through support groups may also have recommendations for therapists who are especially great in this realm.
4. Know that your relationship with food might change.
After learning I can’t smell, several people have said to me, “If I couldn’t smell, I’d be so thin because I would only eat salads.” Besides being tactless, this comment is incorrect. I still experience taste on my tongue—sweet, sour, bitter, salty, and umami—and would prefer a sundae to a salad. What’s missing for me is the flavor associated with smell, so a hard candy is sweet, but I have no idea if it is cherry or strawberry.
Mary Beth Ostrowski is a registered dietitian who lost her sense of smell four years ago from a head injury. She quickly noticed herself reaching for especially salty and sweet foods more often than she had before. “You can feel that tingling on your tongue when you’re eating something salty. It’s like, Oh, I’m finally experiencing something,” Ostrowski, who works at Riverview Medical Center in Red Bank, New Jersey, tells SELF.
It’s true that your ability to smell and taste the nuances of what’s on your plate will change. But that doesn’t mean you can’t still enjoy your food, potentially in new ways. Chef Joshna Maharaj, author of Take Back the Tray, suggests experimenting with bold flavors such as chiles and citrus, if you don’t already. Ostrowski found that spices such as garlic, onion, and cayenne pepper also provide a similar sensation to salt.
Another tip is to activate other senses while eating. Hear and feel the crunch of crisp foods such as scallions and crispy fried onions; see an array of colors on your plate. Ostrowski’s salad, for instance, will have red tomatoes and radishes, green snow peas and avocado slices, sesame seeds, and a protein.
All of that said, if you notice your relationship to food changing in a way that concerns you, consider checking in with a registered dietitian for guidance if possible.
5. Take extra safety precautions when cooking.
First and foremost, equip your home with a natural gas detector and smoke detectors, and consider using charcoal instead of a gas grill to reduce the risk of gas leaks.
Maharaj relied on instinct and scent in the kitchen before anosmia hit seven years ago. Now she sets two or three timers when cooking.
Paying much closer attention to expiration dates on food is also crucial, especially if you live alone. Dalton advises being vigilant about how you store food, tossing leftovers earlier, and buying in smaller quantities. Maharaj eventually stopped taking a small taste to determine if food is still fresh. “It became way more of a fear factor experience,” she says. Now she keeps tape and markers near her fridge to put dates on everything. Similarly, Ostrowski cleans out her fridge at least once a week. “You don’t want something pushed in the back turning into a science experiment,” she says.
6. Lean on the other noses in your life.
Spouses, children, and roommates can be invaluable to anosmics, providing sniff checks of food, clothing, the litter box, and more. But these support noses can also describe a scent to you in a way that allows you to be a part of the sensory experience. “You can get in the same conversational space and engage with someone,” says Dalton. “Smells can make people feel emotional. It is something that can be shared with you, even if you don’t have the ability to experience it yourself.”
In 2018, when Maharaj was sightseeing in Split, Croatia, with family, her brother’s girlfriend began describing smells as they walked past food stalls. “Having her commentary helped me get to know this new place,” says Maharaj, who was touched by the spontaneous gesture. “I realized how much I was missing.”
Unfortunately there will likely also be times when loved ones have trouble understanding, or may even forget about your anosmia. “Be patient, but also challenge them to remember,” says Boateng, adding that you can describe how exhausting and hurtful it is to constantly have to remind a loved one of your anosmia.
While anosmics certainly wouldn’t wish this upon anyone, all of this coronavirus-induced increased attention on loss of smell does make it a bit easier to talk about these days.
Says Dalton, “It’s no longer in the shadows.”