“Smell! This smells wonderful.”
“Never mind, I can’t smell.”
“Sure you can. Try,” the woman insists as she thrusts something under my nose. “It’s awesome!”
“No, really. I can’t smell.”
“Are you having a cold?”
“No, I just don’t have a sense of smell, I never had.”
Head is thrown back, eyes widen.
“But surely you can smell X?”
“No, I can’t.”
“Not even Y?”
“No, nothing at all.”
“OMG, that’s awful!” (Or, “You’re lucky!”, depending on whether the object under discussion smells good or bad.)
I understand. It takes time to take it in. It is not every day you meet someone who can’t smell spoiled food, farts, leaking gas, freshly mown grass or roses – a woman who won’t use perfume because to her it’s just expensive, colored water. Or who will drink sour milk without batting an eye. Or who is genuinely surprised when being handed a cup of freshly brewed coffee (because no wafts had given her a hint that coffee was in the making).
In fact, until two years ago or so, I had never met another person who was also born without olfactory organs, and today I know them only thanks to Facebook. Until I came across this Facebook group, I had no clue it was a condition with a name: congenital anosmia.
The majority of people without a sense of smell are so-called acquired anosmics, meaning they lost their sense of smell later in life and (thus) have memories of smell. In most cases, the loss is the result of a head or brain injury, or a nasal condition.
The second group, congenital anosmics, constitute only one to three percent of all anosmics. The estimate is vague is because many, including myself, have never seen a physician and thus our disorder has never been registered in any system. Whereas some acquired anosmics may regain their sense of smell (either naturally or through treatment), there is no cure for congenital anosmia.
Once people have recovered from the idea that I am not having the flu or a cold, yet can’t smell, the next question invariably pops up, “Can you taste?” or “Can you appreciate food?”
This question is more easily answered by acquired anosmics as they can compare ‘before’ and ‘after.’ For congenital anosmics, however, this is quite a different matter. Sure we taste, but most likely what we taste is very different from the experience of those who can smell, and what we can or cannot taste varies among congenital anosmics.
Coffee is a good example of how smell affects your taste. Many people love coffee until they get a severe cold and can’t smell anymore; suddenly the coffee is bitter or tasteless. While taste buds on your tongue determine whether something is sweet, salty, bitter, sour, or savory (umami), the sensory cells along the roof of your nose detect odorants. The combination of these two create the perception of flavor. There is a third element, the trigeminal nerve, which I’ll get back to later.
Anosmics lack (part of) the sensory cells and thus need to identify their food in other ways. Texture is one of these. The reason Ben & Jerry ice cream contains such big chunks is because Ben Cohen, one of the founders, is anosmic and he insisted that chunks needed to be added to enhance the taste (the development of flavors was Jerry’s task).
In my baby photo album there is a picture of me as a one-year old in front of a birthday cake. My mother’s note accompanies it, “You didn’t like the whipped cream.” Two and five years later there are photos of a similar setting, with the note, “The whipped cream is still not a success.” I still don’t like whipped cream. For many (congenital) anosmics, slimy/gooey food is a no, thank you. For some this is pudding, for others butter, mayonnaise and/or cheese.
Visual presentation is another important element. I’m one of the anosmics who can’t identify fruits in a fruit salad or flavors in ice cream were it not for color and/or texture. When tasting two different kinds of ice cream I may be able to distinguish that they taste differently but not that say, one is strawberry and the other is mango. What we can or cannot taste differs per person, for example, apart from color I can identify lemon and chocolate ice cream by their textures.
Unless I can see what it is, I often have no idea what I am eating: a chunk of potato or carrot, boiled that is, when both are kind of mushy. If I can’t smell the food and not taste it properly, plus I am unable to visually identify what it is, how in the world do I know if this food is safe to eat? In such a case all primal-instinct requirements to determine the safety of food are lacking. As a result I don’t enjoy curries served in restaurants. What are those pieces hidden in a thick sauce? Were I to make that same curry myself, knowing what ingredients I had added, I’d love it (not when it’s spicy though, more on that later).
There is no catch-all answer to what anosmics do or do not smell, taste, appreciate in food. However, not being able to smell does impact our lives, whether we are acquired or congenital anosmics.
Where There’s Smoke, There’s Fire
A charcoaled toast or burned pan can happen to anybody, but an unpleasant smell wafting through the air will make you quickly run to the kitchen. Anosmics, on the other hand, have no clue anything is wrong until our direct environment actually becomes black with smoke.
Cooking with Gas
We can’t smell gas. If we are alone in the house and a gas detector goes off, where do we search for the problem? Many minimize the risk by cooking on an electric stove.
Raise Your Hand if You’re Sure
Many of us worry about our personal hygiene, wanting to fit in with the world of people who can smell and not put them off by stinking. Did we put on enough deodorant? Can you smell us after we have left the bathroom? I always forget my clothes stink after having been in the company of smokers – the airing of clothes (or bedding) is an abstract concept, something I learned by watching others do it, not because I myself see the purpose of it.
Quality of Life and Depression
Acquired anosmics have a memory of smell and while the severeness of their condition varies, losing (part of) their olfactory organs may have a substantial impact on the quality of life. According to a study by the Monell Chemical Senses Center, depression is relatively high among (acquired) anosmics.
A Missing Piece
Among congenital anosmics, opinions vary as to whether we miss the ability to smell. Some argue you can’t miss something you have never had. Others, myself included, do feel we miss something. Just as I believe a child from an abused family can very well miss the concept of love when playing in a friend’s loving home, I feel I miss something when watching the elation on people’s faces when they walk into a bakery or into a curry restaurant. I feel I miss an intensity of emotions, not only when it comes to eating but to living in general – a topic so wide it warrants a separate article.
A Lack of Cultural Sensitivity and Understanding
Anosmia is often dismissed (“Oh well, it’s better than being blind”) or not taken seriously (“Surely, you know when your clothes stink…”). A fellow anosmic recently explained that aromatic infusions just taste like warm water to her, to which she once got the response to steep the herbs longer, which – she commented – is like trying to get a blind person to see by using brighter lights. It is hard, if not impossible, to enjoy food when the pepper only burns your mouth or the gooey texture makes you want to puke. I am always grateful when my friends – who know that I am an anosmic – ask me what not to cook when I come over for dinner. Just like you’d adapt your dish for a guest with allergies, we greatly appreciate it if you do that for us too.
Fortunately, things are changing. Anosmia is getting a face.
On February 25 and 26, 2017, the first SmellTaste event in the US (link) will take place with workshops, lectures, discussions and social events around smell and taste disorders. In the United Kingdom, meanwhile, anosmics founded the Fifth Sense, which provides information about and support for anosmics in the UK.
The Monell Chemical Senses Center in the US is, according to their website, “the world’s only independent, non-profit scientific institute dedicated to interdisciplinary basic research on the senses of taste and smell.” Worldwide, few studies have been done on the subject of anosmia, and if there have, they mostly concern acquired anosmia. This is changing too. Monell will start a study on congenital anosmics this spring.
Since 2012, anosmia even has an Awareness Day: February 27, backed by both Fifth Sense and Monell. Learn more about the initiative on the Facebook page. There are several Facebook pages for anosmics, for example here.
Earlier I promised to say a bit more about the trigeminal nerve, the third important element when tasting food (besides the taste buds and sensory cells). This nerve senses sensations such as warmth, coolness, and sharpness. Eating mint, for example, gives the sensation of cool air, even though the air you inhale when eating that mint remains the same.
With the sensory cells lacking, in many cases the trigeminal nerve plays a bigger role. It is the reason why some of us are oversensitive to spicy food. While some love it, arguing that without hot spices their food has no taste at all, in others, including myself, these nerves are so sensitive that they register nothing but unpleasant, even painful, prickles.
I was not aware of this sensitivity as such until my partner and I started traveling in Asia. During one of our first meals, the fish and vegetables were so hot they could have melted steel, even though I mixed them with whopping quantities of white rice. We had been invited to dinner and were in the company of other people. I felt uncomfortable not honoring the hospitality shown to us and tried again. I took a bite of green vegetables, not realizing they were filled with whole, tongue-searing peppers. I became rigid with pain. For a week I was in agony. My mouth was throbbing with pain and filled with blisters. My tongue, my gums and lips were inflamed to the extent that brushing my teeth and even drinking water were painful for at least a week.
I remember a history lesson in school where I heard the story of kings who feared people would poison their food to kill them. And so they had tasters, who would try the food and be the ones to drop dead if it were poisoned. I don’t fear poison; I do fear hot food. Ever since that evening, when I am in a situation where food may be spicy, Coen, my partner, tastes all the dishes on the table. He will comment with a ‘yes, good to go’, a definite ‘no’, or ‘maybe, try a tiny bit.’ I may not have a sense of smell, but I do have a personal taster!
Photo by Pedro Ribeiro Simões CC BY