Life with Parosmia and Effects of Covid Smell

With the Delta variant taking precedent in media, there is a silent disorder that is diminishing the quality of life for long haulers – making them more prone to depression and suicidal ideations. That disorder is parosmia. Youtuber Yara Elmjouie, a popular food vlogger, has recently highlighted some research of parosmia, or “Covid Smell”.

In his vlog, he interviews several subjects all dealing with parosmia, some for over a year. They describe how parosmia negatively affects the quality of their life after dealing with Covid. Parosmia is an incurable disorder that distorts smell and taste.

Sufferers say that instead of smelling say, coffee and chicken, they instead smell sewage and cigarette smoke. This lingering distortion has affected 7.77 percent of Covid survivors, according to one international study. Other studies estimate an even higher percentage of 12.78.

Often confused with anosmia, which is the complete loss of smell and taste, parosmia is much worse. It’s possibly affecting millions around the world. Still, it is not gaining widespread attention. Most people don’t know this affliction exists.

Even those highlighted in the documentary thought that they were alone. Parosmia occurs when smell receptor cells in your nose, called olfactory sensory neurons, don’t detect odors and translate them to your brain the way they should.

Due to an increase in several doctors and influencers highlighting this disorder on social media, education of this strange affliction is growing. The Monell Chemical Senses Center in Philadelphia, Pennsylvania is at the center of that research.

Dr. Danielle Reed is the Associate Director and has been studying the science behind smell and taste for 30 years. She states that those that suffer from parosmia face a different struggle. Most that are dealing with this started off with a complete loss of smell and taste, or anosmia.

During the documentary she advises:

Now, what happens, we think, with parosmia, is as the receptors are coming back, they don't come back uniformly and correctly. Some come back well, some are poorly. And the sense of smell is not quite right.

Dr. Reed later states,

So that's the other component of this. The nose cells have to talk to the brain. And we think that maybe in that rewiring process —so when the lights come back on and the rewiring to the brain starts, it’s not quite right. It's rewiring the wrong smell receptor to the wrong part of the brain.

Parosmia is not a new affliction. It has been around for years and has known varying causes including, sinus infections, head injuries, and even treatment of certain cancers. Evette Mosley is a Stage 4 ovarian cancer survivor.

She has been in remission for a little over three years now. She suffered from parosmia for 4 months in the midst of and on the tail end of her cancer treatments. Here is what she had to say about her affliction.

Did you have a complete loss of smell and taste, or did you have a distorted sense of smell and taste?

It was distorted, very distorted. Sweet things tasted sour. Sour things tasted sweet. And so forth.

Did you ever get a smell of sewage or chemicals? Did this affect your quality of life?

Never sewage, but I did get chemical smells. Especially with meat products.

Oh wow. How long did this last?

I had to remember certain foods would taste different than I remembered so I had to keep that in mind when cooking and I couldn’t really smell if something was burning or over spiced so I had to hover over my food. It lasted for about 4 or 5 months. I got nauseous a lot when eating because the food smelled or tasted off.

Did you know how common it was before you got it?

It didn’t [affect] my day to say that much [except] for getting nauseous or lightheaded from time to time because of the chemical smell. Yes, I was warned it was a common side effect.

Did you know that those with Covid are more likely to have this just like a complete loss of smell and taste?

No, I didn’t know that.

Did your smell go back to normal all at once or was it gradual?

It was gradual over the course of about two weeks.

Evette, an Atlanta native, is in full remission and is again enjoying the foods she once loved. For the sufferers that are dealing with this due to Covid, they may not be so lucky. Two participants in the documentary advised that they have been dealing with parosmia for a year.

The data highlighting the quality of life for those dealing with it long term has been grim. Alfred M.C Iloreta, Jr., MD is the assistant professor of Otolaryngology and a member of the Division of Rhinology and Skull Base Surgery at the Mt. Sinai Hospital.

He also weighed in on this towards the end of the documentary. He is currently working on one of the largest studies of COVID-induced parosmia ever conducted.

He shared,

Well, we're finding that all have significant quality-of-life issues that are actually worse than patients with just regular loss of smell. You can see them just suffering. They’re in tears half the time. They’d rather smell nothing than smell terrible, rancid meat all the time.

Through the suffering, as more publicity is given to this complex disorder, those battling are finding solidarity in knowing that they are not alone. Several others in the US and worldwide alike are coming forward with their own plight.

Lina Alnadi, a London-based filmmaker has videos giving tips on how to make living with the affliction more bearable. Ashley Loiseau is another vlogger that has joined the ranks of many, in documenting her experience here in the states. Though this has severely affected their everyday life, they want others to know that it is possible to get some sense of normalcy in the midst of long-hauler chaos.