Acidic red wine, dog breath, freshly baked bread, Christmas, rotten eggs, babies, microwaved fish, roses, dog poo, warm cinnamon rolls, the ocean, and farts. These are just a handful of the responses I received when I posted in the "Congenital Anosmia" Facebook group asking what members would most like to smell. Fascinating and moving, the varied answers made me feel guilty for the smells and sensations, both good and bad, that I take for granted each and every day.
Olfactory disorders, such as anosmia—the inability to smell—are believed to affect five percent of the UK population, with an additional 15 percent suffering from hyposmia, a limited ability to smell. Despite there being more people in the UK with anosmia than those who are blind or profoundly deaf, there is very little support in place for people without smell—no Royal National Institute, nor substantial scientific research into the condition.
In comparison to loss of vision or hearing, not being able to smell is generally considered far less serious. "I deal with people who are very ill, so I consider my condition to be minor in the scale of things that I see," said Michael Brada, a neurooncologist from Wimbledon who was left with anosmia after surgery for nasal polyps.
To some, not being able to smell even has its benefits. Congenital anosmic Mary Ellen Pruim revealed that she is "always grateful when I'm on a road trip and everyone in the car is saying, 'Eww, what's that smell?!' and I can just sit back and relax."
"People find anosmia amusing—they don't understand that it is very isolating, in the same way that being deaf, or blind is."
However, according to Carl Philpott, the director of one of only five NHS clinics for smell and taste disorders, the impact that anosmia can have on sufferers is "completely underestimated". "People think that losing your sight and your hearing is a very big deal, but losing your sense of smell is something you can live with," he said. "Yes, people obviously do carry on and live without it as they do with other sensory losses, but when you can't smell you start to realise what a big part smell plays in everyday life."
Philpott set up his clinic five years ago when he recognised that there was a lack of support for patients with smell and taste disorders. "As a consequence, we've been flooded with work because there's no other outlet for it," he said. "In the current climate, I have to fight to see these patients because providing a service to them is considered to be an optional extra—it's not seen as important."
Indeed, living with anosmia can be far more difficult than people realise. In 2014, Fifth Sense—a UK-based, volunteer-led charity supporting people with smell and taste disorders—asked its members to complete an anonymous online survey regarding the impact their disorder had on their quality of life. 52.4 percent of respondents said they had suffered or currently suffered from depression and anxiety in relation to their condition.
Because of the lack of understanding in wider society about smell and taste disorders, anosmics can often feel very isolated. "As there are no visual indicators, the attitude of many people is 'not being able to smell is no big deal,'" said Duncan Boak, Fifth Sense's founder, who lost his sense of smell as a result of a head injury ten years ago. "So anosmics find it difficult to get sympathy, support, and advice from doctors, friends, and even partners."
Louise Woollam, a perfume writer who lost her sense of smell following a cold last year agrees. "People find anosmia amusing—they don't understand that it is very isolating, in the same way that being deaf, or blind is," she said.
There are three main causes of anosmia in addition to congenital anosmia, which is present from birth. The most common is sinus disease (or common sinusitis), which accounts for around 60 percent of all anosmia cases seen by medical practitioners. The second most common cause is damage resulting from a cold virus—a person gets a cold along with all the usual symptoms, including loss of smell, but when the cold goes and all the symptoms disappear their sense of smell doesn't return. The third is resulting from a head injury. The smell loss in each of these situations may be partial or complete depending on the individual case.
Whether or not patients can regain their sense of smell is dependent on each individual case and the severity of the loss at the outset. According to Philpott, anosmia is usually "very reversible" in patients with sinus disease, but it all depends on "the severity of the individual case and also how good people are at continuing with long-term medical treatment".
"Phantom smells", known as parosmia, are a common and disturbing side effect of anosmia. Tom Herrmann, who became anosmic in 1993 after a concussion caused from a cycling accident, said that in the years following his accident he would often "be sure there was a strong odour", but no one else would be able to detect it. To Herrmann, persistent smells of burning wood and vinegar were the most common, but "even the nice phantom smells" such as the smell of a bakery would become "maddening after a few hours."
Woollam said her parosmia threw her into a "suicidal depression" last year. "So few people understood the sheer horror of my day-to-day life; something as simple as a work colleague putting a cup of coffee on my desk could start a whole day of nausea," she said. As Woollam's sense of smell gradually began to return, "everything smelled and tasted like sewage—it was a living nightmare".
Additionally, 95 percent of Fifth Sense's survey respondents said that they had "a reduced enjoyment of food or reduction in appetite." "Food is a necessary evil," said Herrmann. "There really isn't any food I like at this point, just food I tolerate." Many interviewees said that their condition leads them to look for texture rather than flavour in food. This is apparently why Ben & Jerry's ice cream has "bits" in; founder Ben Cohen reportedly had no sense of smell.
The sense of smell is even related to memory, thanks to the limbic system, one of the areas of the brain that the smell-nerve pathways connect to. "There's a direct connection between the smell pathways to memory," said Philpott, "which is why you can walk into a room and smell something that suddenly reminds you of a childhood memory or a previous situation, without you having to see or hear anything."
Smell may be the most unsung and underrated of the five senses—the "Cinderella sense", according to Philpott—but it's easy to underestimate the impact of a life without it. So, next time you complain of the stench of old milk, an overflowing rubbish bin, or the tube at rush hour, appreciate how lucky you are to acknowledge that smell at all.