Dia Kline was 4 years old when she first realized there was a thing called smell, and she couldn’t do it.
“I remember walking into my home with my father and brother, and as soon as we walked through the front door, they both said, ‘Ah, spaghetti for dinner.’ ” Kline said. “When I breathed in, all I got was warm air. I didn’t understand how warm air equated to ‘We’re having spaghetti for dinner.’ ”
Kline is a congenital anosmic, a technical term for those who have been unable to smell since birth. However, it wasn’t until her forties that she realized her inability to smell had a name. “My daughter came home from school and she had had a psychology class and she said, what you have is congenital anosmia,” Kline recounted. “I looked it up and I was like, holy shit, I have a name. That is exactly what I am.”
Since then, Kline has devoted herself to spreading information about congenital anosmia. She has a YouTube account where she makes videos about the anosmia experience. She’s also an ambassador for Fifth Sense, a charity for smell and taste disorders. According to the organization, approximately 1 in 10,000 people are affected by congenital anosmia, defined as smell loss from birth, though this number is hard to pin down and depends on who you ask. Regardless of how many congenital anosmics there really are in the world, I am one of them.
I was ten on a field trip to wastewater treatment, and couldn’t understand what everyone was so repulsed by water. I later learned that while most people are born with two olfactory bulbs, the neural structure heavily involved in smell, I was born with just half of one. I can’t smell cookies baking in the oven, nor can I smell smoke (more on that later). I can “smell” peppermint but as I recently learned, that’s likely being detected through something called the trigeminal system, which is different.
Smell is the underappreciated sense, especially when it comes to scientific research devoted to it. “If you look at the number of publications historically done you see vision then hearing then touch then taste,” Valentina Parma, the assistant director of the Monell Chemical Senses Center, said. Coming in last: smell.
But that all changed with COVID-19. As soon as anosmia was announced as a main symptom of the virus, interest in the condition soared. “It’s been a big remarkable change for us in regards to the public attention,” said Danielle Reed, the associate director of the Monell Chemical Senses Center, who studies the differences in taste and smell between people. She described experiencing the increased interest as “a little bit like being a wallflower and suddenly the prom queen.”
Parma agreed. “Our research is being taken more seriously because people had this strong reminder of why this is important.”
Discussing your sense of smell (or worrying lack thereof) became commonplace. When I was screened for coronavirus symptoms at college for the first time and a nurse asked if I had a sense of smell, I responded “no” and, seeing the nurse’s face, quickly added, “But it’s always been like that.” I never made that joke again.
Smell can be a temporary symptom of the virus, but according to a BMJ study published on Wednesday, about 5 percent of patients with confirmed cases of COVID-19 report persistent smell or taste dysfunction six months after their infection. As the coronavirus has thrust anosmia (which can also be caused by other viruses) into the spotlight, lifelong anosmics have mixed feelings about all the new conversations around smell—many think that their condition should have been taken more seriously to begin with.
“Now it’s a big deal and everyone wants to commiserate on the things they’re missing out on and the things that aren’t the same,” Amanda Ybarrá, a 43-year-old congenital anosmic from Colorado, said.
As many congenital anosmics will tell you, although the pandemic increased awareness of anosmia, acquired and congenital anosmia are two very distinct experiences.
“To hear the word anosmia in the public vernacular was pretty cool,” Kline said. “But then to hear people talk about the anosmic experience and anosmia in terms of only the acquired experience was infuriating. I was like, we are not that. There’s a whole other world. It’s a whole different planet. Like you forgot the other planet.”
After all, people who lose their sense of smell have experienced some parts of their lives with the sense. Congenital anosmics never had it to begin with.
For Rob Seitz, a 39-year-old congenital anosmic from Philadelphia, acquired anosmics bring up a complex slew of feelings.
“We congenital anosmics have somewhat of a cheeky response when hearing people complain about losing their sense of smell,” he wrote in an email to Slate. “Sometimes we think, ‘Oh stop complaining, I’ve lived like this my whole life and it’s really not that bad, just suck it up!’ Then again, maybe there’s something deeper driving that reaction: Like we don’t want to admit that we will never know the full experience of being alive. Maybe we’re jealous that people have experienced what we never will. Is it better to know the world of smells and lose it or just to never have known it at all? I really can’t answer that.”
Smell is more about the pleasure of spaghetti on the stove. A lack of smell makes life a bit more dangerous—a fact that newer anosmics will have to contend with, too.
“When you’re cooking, you don’t notice things are burning. That’s a risk,” Josie Wratten, a 45-year-old congenital anosmic living in Colorado, said. “I’ve burned toast, I’ve forgotten things are in the oven, and the timer goes off and it’s burned. It hasn’t gone to the point of danger for me, but it ruined food. There is a safety issue for sure but because I do live with someone who can smell, I don’t think about it as much.”
Elisa Ortiz, a 42-year-old anosmic in Arlington, Virginia, hasn’t been as lucky. A few years ago, when her husband was out of town, she left her dog at home with the stove still on. Her neighbor, called the fire department, and her dog survived. But it was a “near-death instance,” she says.
Because of this, many see anosmia as an “invisible disability,” or a disability that is not immediately apparent to others but can impact your daily life.
“Not being able to smell a fire is a disability,” said Reed. Kline said that she has “to be careful of my safety on a daily and listening to people dismiss and disregard the hardships and dangers that come hand in hand with a sensory disability.” Once, Ybarrá “missed an entire gas leak.”
Then there’s also the fact that you’re constantly explaining yourself to others. Speaking to other anosmics, I learned that many get the same questions I do when I tell people that I can’t smell. The conversation usually goes something like this: Are you sure? Yes. Can you taste? Yes. You must be able to smell really strong things? Not really!
“Every time you say it, you get this litany of disbelief essentially accusing you of being a liar and not understanding what’s going on,” Ortiz recounted. “It’s not the worst thing in the world but it’s certainly demoralizing to have dozens and dozens of people question you as if you don’t know what’s going on in your own body.”
Another challenge can be the emotional aspect. Just like with any other animal, smell can play a role in how humans interact with—and connect—with others.
“When I met my now-husband and fell in love, I felt like, ‘Can I really love him if I don’t know what pheromones are and don’t know what the smell connection is?’ ” Wratten said. “When I had my son, the same thing where people are like, ‘The mother-child connection is all through smell and that’s how you get emotional bonds,’ and I was like, ‘Do I have an emotional bond to my child.’ I got really worried about that.” Although she recognizes her connection with her son is stable, all the same she does still wonder what else she’s missing out on. After all, us congenital anosmics will also never experience getting whisked back to a point in time by the smell of a particular perfume, or candle.
Many anosmics hope for more information, understanding, and research about anosmia.
And while this new COVID-spurred attention to anosmia will allow researchers to learn more about the mechanics of smell, unfortunately, little can be done for congenital anosmics.
“If everything goes our way, we’ll be learning an awful lot about how the immune system turns on the nose and hurts the cells,” Reed said. “That may help some people who have a certain kind of acquired anosmia. But if you’re born without a protein that’s important for the cells to talk to the brain, it’s not going to help you too much.”
Parma was a bit more optimistic—at least, when it comes to the potential smell technology of the future. “If we digitize olfaction and mimic what the olfactory bulb does, then why not?” she said. A team of researchers at VCU are working on something just like that, but it’s still very much in its prototype stages. Someday, Parma thinks maybe it could perform the function of a nose for anosmics: “If we’re dreaming, it can be possible, in the same way that it’s possible with cochlear implants.”
Now, having congenital anosmia is by no means the end of the world. Most congenital anosmics will say they’ve lived a mostly normal life. There are even weird silver linings. For one, body odors—both your own and others—are not as much of an issue.
“I’m a huge proponent of farting,” Kline noted. “I love farting because it’s one of the best feelings in the world and I don’t have any of the obviously negative consequence of the fart. I am definitely known in my family for being an unabashed farter.”
Some anosmics consider this a superpower of sorts. “I get every nasty diaper,” Ybarrá said. “I can do the gross things. As long as I don’t have to touch anything gross, I can do the gross things. Those things don’t bother me.” I’ve personally cleaned up friend’s throw-up, camper’s pee, my dog’s poop, and housed pet mice in my room all thanks to my lack of functioning olfactory bulbs. I really, truly, don’t mind it. A word to my acquired anosmia peers: Maybe you won’t, either.