What does confusion smell like

The more I learn, the more I feel in control. By September, many people posting to the site had experienced smell and taste changes lasting more than half a year. More chaotic narratives appeared now somewhat easier to narrate, with trajectories that included more recognisable patterns over the long term. A common thread was failure to find help in conventional health settings and only feeling understood within the supportive environment of the moderated Facebook group.

There was also some evidence of new terms being coined. People struggled with overwhelming and often pervasively unpleasant parosmic smells. They were described with words that included: sewer, cat food, spicy, pungent, strong herbs, sickly metallic, dirty fish tank, off milk or yoghurt, sweet and grassy, dog food, curry, garlic, sickly sweet metallic, kippers, chemicals and fruity sewage.

There was also evidence of people adjusting to their condition and finding ways of managing it. Again, this was often perceived as being mediated by the group:. Some things I just ploughed through and tried to get used to the adjusted taste.

Some things still make me feel sick, like washing up liquid and perfume, but most things I can cope with. This ongoing accumulation of terms, encouragement, hints and tips for coping in turn seemed to help others make sense of their condition:.

Besides the work of understanding, explaining and managing their condition, the most direct impact reported was on the ingestion and enjoyment of food. This was mediated by a profound alteration in the smell and flavour of food, mainly due to the role smell plays in the perception of flavour, which most people think of as taste. Again, there was not one pattern here, but there were some repeated themes around altered flavour perception and how it linked to weight loss, weight gain, pleasure and socialising.

The impact on health, weight and body image was most commonly described as negative, but not exclusively. Further, many people recounted different sensory changes at different stages of the Covid journey, with concomitantly variable effects on weight loss, gain and nutritional compromise. Most participants described anosmia and the concomitant flavour changes as having major impacts on appetite, enjoyment, fullness and satiety.

Food became bland and unappetising resulting in a reduced desire to eat, cook or participate in food related activities. Parosmia and phantosmia had even more harrowing effects on food and eating. Only yoghurt is ok. So I lose weight instead of gaining it.

The effect of these flavour changes on diet and diet quality and content varied greatly from person to person. Both with anosmia and parosmia people could be fearful about eating unsafe foods. Universally, parosmia resulted in a much-reduced selection of foods that almost always raised concerns about health. Overall this experience of altered flavour was reported as pushing appetite and intake in one of two ways.

Eating now involved chasing high impact taste and trigeminal sensations such as sugar, salt and piquancy. The most commonly described foods included crisps, chocolate, chilli crisps, and other items that provided unusual textural experiences. For some this increase in consumption of snacks resulted in a reduction of intake at mealtimes.

My weight has gone up. Just one more depressing reminder of this illness. For others flavours had become so unpleasant that food was avoided leading to weight loss as well as other cognitive and emotional consequences:.

I dread eating and even going to restaurants or being around food is hard for me. I have absolutely no energy and severe fatigue. My eyes are sunken in from malnutrition.

I eat mostly because my body tells me I need to. More vegetables. Food and eating it with other people is a major source of daily pleasure and social bonding that is often not appreciated until it is no longer possible [ 16 , 17 ]. Research into altered eating in head and neck cancer survivors has shown that commensality—the social sharing of food—was one of the most grieved aspects of an altered relationship to food [ 10 ].

Posts revealed loss of food related joy and pleasure and the associated joy in anticipation of food. Now food is just sustenance…As there is no pleasure in eating, I stop as soon as I am full.

And with everything tasting bland, I find that I feel full very quickly… I find it extremely depressing. All I can comment on in the texture of the food I am eating. I have almost no appetite and eat because I know I have to in order to stay healthy. I get no enjoyment from my food anymore and the only thing I seem to enjoy eating are cold, peeled apples because I like the refreshing sensation in my mouth.

Several commented on the perceived effect on family life:. The disruption of these cues was reported as fundamentally changing the relationship to the world, self, and others in a way that was often described in terms of a fundamental existential upheaval or assault:.

Or if not blank, shades of decay. I feel alien from myself. Like a part of me is missing as I can no longer smell and experience the emotions of everyday basic living. Detached from normality. Lonely in my body. This profound disorientation can be traced in part to the uncoupling of objects, their associated smells and the emotions to which these normally give rise. Things not smelling at all was reported as inducing feelings of detachment, dissociation and unreality:.

The smell in the car was so horrible! Before I could hardly wait to be home to eat a slice of new made pizza. Now I had to drive with full aircon and open windows. I was on the edge of what I can take. Things no longer smelled like they should, and food became confused with non-food in unpredictable and upsetting ways:. As one person summarised it:. The effect of this was also for some felt in their professional life. For those who partly relied on their nose to do their job e. Professionally, anosmia makes things so much more difficult.

As well as the things in the world, people also reported their social world was impacted by taste and smell alteration:. Body odour is known to be significant to sexual relationships in facilitating the detection of key factors that signal compatibility, maintaining familiarity and security within a relationship, and moderating sexual desire [ 18 ].

This could also switch to active aversion and disgust with parosmia:. Like he is a stranger. I used to feel comforted being able to smell him while cuddling.

Also I am constantly worried that I smell bad myself and it makes me very insecure. It makes me really self-conscious. Is that roadkill smell me or him? Imagine your partner saying that to you? For those that did report talking about it, the result was not always a better understanding.

The following long quote details the journey from a relatively unaffected sex life with anosmia, to much greater difficulties in intimacy and understanding brought on by parosmia:. It was unbearable, no matter how hard I tried to put it out of my mind and make do. The first few times I turned away, he accused me of exaggerating, and he insisted that there was no possible way his breath was a problem.

It made me feel stupid. I wished so badly that I was making it up. I wished it were a figment of my imagination, a dramatic charade I could humbly admit to falsifying and then move on, put it behind us. But it was abhorrent. It still is. Too far. We have to play this odd game of fumbling around in bed to make sure the foul odor in question does not make its way to my defective nose and throw sex out the window entirely. However, there was also another side to this.

One commentator reported better intimate relationships and a more adventurous sex life as the result of their anosmia:. I used to be so sensitive to smells and that would get in the way of how much or how little I participated. It was not only romantic and sexual relationships that were affected. A few comments also addressed the impact on maternal bonding with babies and children, and the impact on dating for those looking for a relationship, issues that had come up frequently in our passive thematic analysis.

This last quote highlights the problems of an altered relationship to self, brought on by smell loss or distortion, as also evinced by some of the quotes above. Body odours were of particular concern both in terms of relationship to self and others, and because many commented that the loss of ability to register natural body odour was the first thing they noticed, and the last thing to return. Participants mentioned armpits, menstrual blood, faeces, urine, farts and sweat as casualties in their altered relationship to their own body odour.

Apart for the importance of self-smells to the perception of others, some also commented on the importance of it to the sense of self:. This exploratory co-produced research has brought to light the impact of smell and taste loss and distortion on a large cohort of self-reported COVID Facebook members. The impact is extensive.

At the broadest level, the impact shows up in the work of having to manage a poorly understood and fluctuating condition; in an altered relationship with food that includes loss of pleasure and changes in appetite and weight; and in an altered relationship to the self, the world and other people. Many of these impacts in turn negatively impacted upon mental health.

People with smell and taste loss or distortion may have the burden of living with an invisible illness, which nevertheless leads to severe disruption of daily life and routines. The Altered Eating Framework [ 10 ] identifies that in an altered relationship with food, multiple domains of life can be affected.

This is evinced by this work where in addition to the interpersonal and cognitive labour of trying to understand and explain the condition to self and others, there were real, often worrying, physiological consequences in terms of weight loss, weight gain and malnutrition; there were profound disruptions to social, family and love lives; and an altered relationship to the world and the self. Despite some exceptions, most of these impacts were negative.

The altered eating framework suggests that the emotional domain of altered eating problems be seen, in part, as the cumulative tally of the impact of the issues with food on fundamental well-being. Some of these consequences were profound:. Will I ever get better? This has left me so low in mood. When I look in the mirror there is definitely a slight sadness and emptiness in my eyes that was never there before. Of course, some of these comments may be attributed to the broader impact of COVID and post viral sequalae, though the group did tend to stay focussed on smell and taste loss and its impact.

In , the researchers reported finding the virus in brain tissue from an month-old boy who died of encephalitis, or inflammation of the brain. Coronaviruses can do much more than cause respiratory diseases, Talbot says.

From there, the viruses spread quickly throughout the brain. His lab plans to repeat those experiments with SARS-CoV-2, but he cautions that mouse experiments may not replicate what a virus does in people in real-world conditions.

Many viruses, Perlman says, have evolved other ways of getting into the nervous system — including tricks for slipping past the guardian cells of the blood-brain barrier, which normally keep blood-borne pathogens out of the brain. One way it could do this is through rampant inflammation known as a cytokine storm. In a case study published in Radiology , doctors in Detroit reported brain scan abnormalities indicative of a rare encephalopathy linked to cytokine storms in an airline worker in her mids who tested positive for the virus.

Another concern is reports of mysterious abnormalities in blood clotting in young and middle-aged Covid patients that may increase the risk of stroke. Some secondary effects could take time to develop. This article originally appeared in Knowable Magazine , an independent journalistic endeavor from Annual Reviews. Read the original story here. Register or Log In. The Magazine Shop. Login Register Stay Curious Subscribe.

Newsletter Sign up for our email newsletter for the latest science news. Sign Up. The virus could enter the brain through the bloodstream if it can get past the cellular defense wall known as the blood-brain barrier.

Or it could conceivably infect olfactory neurons in the nasal cavity or peripheral nerves elsewhere in the body and hitchhike into the brain along their axons. Scientists don't yet know which, if any, of these routes the virus can take.

Loss of smell has been reported in many Covid patients. The good news is that scientists are beginning to unpick the molecular mechanisms of parosmia, which could eventually lead to better ways of treating it. On the roof of the nasal cavity, about 7cm behind the nostrils, is a thin membrane studded with specialised cells called olfactory sensory neurons, which capture odour molecules from the air we breathe in and out, and send electrical signals to the brain area that processes scent.

Infections such as Covid can damage these neurons. The current leading theory is that as they regenerate, miswiring and disordered signalling can occur, resulting in parosmia.

Triggers vary from person to person, but many of the same substances often crop up: coffee, meat, onion, garlic, egg, chocolate, shower gel and toothpaste. Separate research by Dr Jane Parker at the University of Reading and colleagues is beginning to shed light on why these substances are so problematic. In recent experiments, they broke the aroma of coffee down into its constituent molecular parts, and ran them under the noses of people with parosmia and unaffected volunteers.

Rather, there are certain compounds that evoke feelings of disgust in many people with parosmia but which unaffected people tend to describe as pleasant.

Many contain sulphur or nitrogen, although not all such compounds are triggers. They also tend to be detectable by the human nose at very low concentrations. The most frequently reported trigger in coffee was 2-furanmethanethiol, which unaffected participants described as roasty, popcorn or smoky-smelling.

It also supports the miswiring hypothesis - although if this is occurring, it seems not to be happening at random.