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Loss of Smell From COVID-19 Has a Deeper Impact Than You Think

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The COVID-19 pandemic has brought much-needed attention to the problems faced by those with loss of smell. Once a niche field that received little attention from family physicians and the Ear, Nose, and Throat community, anosmia (the total loss of smell), hyposmia (a reduced sense of smell), and qualitative disorders of the sense of smell (parosmia and phantosmia) are now headline news. 

The patient advocacy group AbScent, which formed before the pandemic started, was set up in the United Kingdom to support people who had experienced smell loss. In a rapid response to the developing situation with COVID-19, AbScent set up a closed Facebook group in March 2020 to discuss the concerns of those with the coronavirus. Later in June of that year, when parosmia became a clear and troublesome result of the virus, another closed AbScent group was established. These two Facebook communities became a valuable resource for researchers, with members contributing their experiences in real-time. This model of bringing the patient experience to researchers has highlighted the usefulness of well-managed social media communities. 

So, what’s the big deal about parosmia?

Recent media coverage highlights the frequently described disgust responses to some common foods and household products like coffee, onions, garlic, chicken, and toothpaste. The descriptions run from vomiting at the disgusting odor of coffee to the inability to eat or be present where food is being prepared. All this is easy to describe and portrays, to a certain extent, the difficulties of living with this condition. But the real problem lies with the intangibles and unexplainables that go along with parosmia. Recently published scientific papers are helping flesh out the true scope of living in a world with altered smell. These papers were written based on comments taken from the AbScent social media feeds.

The strange world of parosmia smells is impossible to describe.

This topic comes up over and over in our communities, with people reporting that their new “smellscapes” are like nothing they have experienced before. In describing coffee, words like “sewage” are taken from the real world, but a closer look at the comments reveals that people choose the most disgusting things they can think of as metaphors. So perhaps not “like” sewage, but “on the same order of disgusting as sewage.” Where does this lead us? If we consider the evolutionary usefulness of smell as a warning system for things that might harm us — feces, vomit, spoiling meat, advanced infection — the odors associated with these things provoke a very powerful revulsion response. We are hard-wired to respond to these items as being “bad.” Just how and why a recovering sense of smell affected by parosmia would interpret normal smells as being so repugnant is still being studied, but it is very likely that the altered perception is the result of an incomplete signal being sent to the brain. To return to the frustration of a condition that cannot be described, we can start with a lack of words to accurately tell our families and loved ones how strange and terrible this new smell world is. 

We talk about problems with smell, when in fact the problem has seeped into many aspects of life.

For an illustration of this, let’s start with the problems of smell loss being put squarely at the door of ENTs. The Ear, Nose and Throat doctor is expected to have the answers for the many millions of people who have lost their sense of smell. Patients are asking for referrals to these specialists and sometimes costly imaging procedures. While scans can rule out something sinister that might be affecting the sense of smell (such as a tumor), for the vast majority of those who have had COVID-19 and subsequent smell loss, no further information about that loss will come from having the scan. For the most part, doctors with expertise in this field can offer reassurance but not solutions, and the path to recovery depends on time, smell training, and good self-care. 

So beyond the help of someone with training in managing problems with the nose, what is there that can help?

Well, let’s take a look at diet. Where parosmia is so severe that patients are limited to a short list of safe foods — often bland, non-protein-based foods — it’s easy to see that nutrition and caloric intake are quickly affected. Severe weight loss is often reported. COVID-19 recovery, and in particular long-COVID recovery, requires adequate nutrition, with a varied diet rich in vitamins, minerals, and protein. This is simply not possible for those with severe parosmia. AbScent has developed tips and tricks for dealing with parosmia based on working with our parosmia community, but because everyone’s case is different, experimentation and patience are needed. 

Feeding yourself is one problem, but what about the social aspects of cooking and eating?

Eating together is a powerful social bonding experience. Within a family unit, perhaps with young children, the experience of eating together and being together where food is present is very important. Consider also food, socializing, and holidays. For the person living with parosmia, it is bad enough to remain outside the happy smell memories of Thanksgiving, Christmas, and other holidays. But it is entirely another to have to remove yourself from the holiday table because the smell of togetherness and food is making you sick to your stomach. 

The experience of parosmia is relentless.

It’s with you 24/7. It’s not something that you can get used to. Someone with a “normal” sense of smell can “habituate” to a smell. This means that over time, they will stop smelling a background smell that is ever-present in their environment. A good example of this is the smell of our own house. We don’t notice it because we are so familiar with it. But this is not the case for parosmia, where the brain is constantly pressing the panic button to tell us that every smell is potentially harmful to us.

While parosmia is written about in the popular press as being something that just alters your smell experience, we are now learning that the effects of this qualitative disorder go much deeper than this superficial description would suggest. The effect it is having on mental health has been the biggest surprise of the recent findings. Anxiety, depression, feelings of being isolated or detached from reality are commonly reported. If you are or someone you care for is managing this condition, remember that emotional support is just as important as medical support. 

You can read the two recently published papers on how parosmia affects people here and here.

Photo by Emiliano Vittoriosi on Unsplash

Originally published: February 11, 2022
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