- •Parosmia, as a sequela of Covid-19, is disruptive to the patient in terms of quality of life and dietary intake.
- •Patient communities have played a vital role in helping Covid-19 related smell disorder patients make sense of, and manage, their condition.
- •Management strategies shared in patient groups can be a valuable source of information to assist users in crucial areas such as the management of food.
- Rashid R.A.
- Alaqeedy A.A.
- Al-Ani R.M.
Quantitative and qualitative smell disorders
The quantitative impairments to smell
Qualitative impairments to smell
Materials and methods
Methodology for collecting qualitative data from social media
How parosmia manifests as an altered relationship with food
A social and psychological burden
- •The horrible thing about parosmia is that it isolates you. It makes you feel like you're not human anymore. You constantly are hungry, and constantly feel defeated because everything is so gross tasting. Not only the taste, but the smells that come from [food] make simply breathing in intolerable. Parosmia steals your joy
- •Mine started with onion smelling bad, then it was garlic, eggs, meats, coffee. They all smell horrific and I can't eat them anymore, they taste like they smell. It is becoming a real challenge
- •I sometimes eat really slowly/picky, analysing the food and maybe even turning my nose up a bit - so it comes across as rude, when its actually just the awful taste/smell you're trying to deal with
- •Very isolating as unable to go out socially or eat with/be near work colleagues at break time because don't know what & when ‘smells’ will arrive or be triggered & prompt vomiting
- •When I explain to people they find it funny. I suppose we laugh when we don't understand something. It's frustrating and isolating and makes me feel sad
- •It's debilitating, isolating and sad. It's a handicap
- •many relationships are strained as some people don't believe parosmia is real and tell me I should just try more foods or that it’s all ‘in my head’
Altered behaviour and the meal-time trajectory: from shopping to washing up
- •Shopping is a chore as I have to read the labels on everything so I give up
- •[I] eat in my bedroom because eating with my family is gross
- •Eating my favourite food after a bad day or comfort food when I'm feeling down made all the difference. I don't have that anymore
Altered relationship to self: disrupted self-smelling
- •My own body smells like rotting onions and my husband and dog don't smell right. When I kiss them I no longer inhale their familiar smells because they smell wrong
- •I don't know if my faeces smell awesome or my food smells awful. It's the same. Luckily my faeces smell like seasoned lamb
- •No clue if I personally smell and the body smell that I do smell sometimes is repulsive to me, and it concerns me what others are smelling of me
- •When it was at its worst, my own body odour was something I needed to escape from but never could. Showering didn't help
Altered social and work relationships
- •Losing the smell of my home, my baby, my body, having it affect every single aspect of my day from the moment I wake up and having to brush my teeth, to my showers, the way it took away some of my greatest joys in life,… smelling my husband after a shower, kissing my husband and being close to him, the smell of a campfire, the smell of fresh air, not being able to escape the bad smells, not having one familiar scent … so much.
- •I don't recognise myself as a person, this has completely changed who I am physically & psychologically & socially
- •[I have] anxiety to socialise when food is involved
- •Going out for meals or socialising is challenging and I try to stick to only going to places where I know the menu and with people who are sympathetic
- •I couldn't follow behind my coworker in the stairwell because her perfume was literally going to make me sick. I left and took the elevator
- •[I'm] Missing out on days out and social interactions.
Support comes from the care/family circle
- •I rely on my husband a lot … and I don't know how single people get through it
- •I worry how it affects my family's life, because I have a strong aversion to cooking now - my kids are hungry a lot because I forget to start making food when I need to
Trigger foods/safe foods
- •Hubby can eat 8 hours before and I can still smell it when I get home (with all doors/windows/air fresheners used to the max)
- •Onion powder seems to be on everything! It's a nightmare !
- •When people talk closely to me the mouth stench from them is almost too much and if they have just consumed anything with onions or garlic beyond repulsive and the stink just hangs in the air like I'm standing in a garbage dump
- •I no longer enjoy food at all. One day I can somewhat tolerate an entree, but next time it may have the dreaded nasty taste. List seems to grow. What's good today is not necessarily good tomorrow.
- •[I] don't know what & when ‘smells’ will arrive or be triggered & prompt vomiting
- •Constant changes of smell/tastes, never knowing if it's going to be ok this time
Anxiety over experimentation
- •Being scared of trying food in case I am sick
- •Too wary of trying new things as most of the time it's bad
|Safe/trigger foods||A tally of safe and trigger foods should be kept in an accessible place in view of cohabitants. This will prevent the affected person from coming into contact with trigger foods unnecessarily. The list will change frequently, therefore experimentation is helpful.|
|Bland “safe” foods||These foods can be made more palatable by experimenting with spices, chili, nuts, seeds etc.|
|Cooking methods||If deep-fried, sautéed, roasted foods are objectionable, low temperature cooking is advised.|
|Hot foods vs cold foods||Foods served at a higher temperature will give off more volatiles. Room temperature or cold food is better tolerated. This also goes for meat, such as cold chicken in a sandwich.|
|Gustation or “true taste”||Experimentation with the “true tastes” of salty, sweet, sour, bitter, and umami can make a bland plate of food more interesting. Salty and sweet, or salty and sour for instance.|
|Spice, texture, and temperature variation||The addition of spice to add heat, and texture combinations such as crunchy and creamy, can be helpful in making a meal palatable. Variation in temperature on a plate creates similar interest.|
|Food presentation||Care taken to present an attractive plate with a range of colourful vegetables and fruits can help with appetite. Bland food with little colour served on a white plate can be dispiriting.|
|Nose clip||For extreme cases, nose clips can offer welcome relief.|
Learning to work within the limitations of safe foods
Cooking methods and the maillard reaction
The joy of gustation
The importance of spice, texture, and temperature
We eat with our eyes
The nose clip
Conflict of interest
- 1.Please spend some time reading the feed before you begin posting.
- 2.We discuss parosmia (aka “the smell”) and phantosmia (phantom smells) over at Facebook. com/groups/AbScentparosmia. Please join that group for discussion on these topics
- 3.We represent evidence-based science. We take the advice of our scientific advisory board on all matters to do with treatments.
- 4.Do not post, link or promote to members, either for your own or other business. Irrelevant or copyright protected content is not permitted.
- 5.Please be respectful to others and do not use foul language.
- 6.We are a group to discuss smell and taste loss. Other groups are available to share and discuss other long Covid-19 symptoms.
- 7.Please share your experiences but do not give medical advice. Remember that individual circumstances are different and unqualified advice can be dangerous.
- 8.Posting polls is not permitted as we use them for our own research purposes.
- 9.Content and member comments made in this group represent privileged information. Unauthorised use of the content for outside purposes is not permitted. For further details please contact AbScent.org
- 1.Please spend some time reading the feed before you begin posting. Check out the Featured section.
- 2.Please stay on topic!
- 3.We take the advice of our scientific advisory board on all matters to do with treatments. We need scientific evidence in order to promote any potential treatments.
- 4.Do not post or link to advertising, promotion or irrelevant or copyright protected content.
- 5.Please be respectful to others and do not use foul language.
- 6.Please share your experiences but do not give medical advice. Remember that individual circumstances are different and unqualified advice can be dangerous.
- 7.Do not link to outside surveys.
- 8.The content and member comments made in this group represent privileged information.
- 9.Unauthorised use of content by third parties, for whatever purpose, is not permitted. For further details please contact AbScent.org.
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