1. Life

Living with Post-COVID Parosmia

When 2020 arrived, I was mildly aware of a new virus raging through China and moving into other parts of the world, but never imagined that it would become a worldwide pandemic that would affect me. Yet, that’s what happened. Here’s a small piece of my story.

A Little Background…

After staying home and only going out for groceries and other necessities for nearly all of 2020, I made a mistake. I chose to go home to my parents’ house for Christmas Eve and Christmas Day because those days mean a lot to my mom. I went home fully masked, knowing my sister had been diagnosed with COVID-19 two weeks before but was no longer showing symptoms. I didn’t remove that mask until I returned to my apartment Christmas night.

But two days later, I was sick. I had all the usual symptoms of COVID-19. Chills. Body aches. Constant headaches. Fever. Fatigue.
Three days in, I lost my senses of taste and smell. A day later, I tested positive.

The length and severity of COVID-19 varies from person to person, with some having it a lot worse than others. Even though I was sick for a month and a half, my symptoms and experience were fairly mild compared to others I’ve heard from and read about. The fatigue and body aches were the worst for me, lasting beyond the illness itself. But that’s not what I’m here to talk about. My longest COVID-19 symptom — the one that has affected me the most from a mental and physical standpoint — is parosmia.

What is Parosmia?

The dictionary defines parosmia as “a disorder in the sense of smell, especially the perception of odors that are not present.”

Parosmia can occur when receptor cells in your nose don’t detect and translate odors to your brain the right way. It usually happens after a bad sinus infection or cold, seizures, head injuries, or after the use of certain drugs. It is now a symptom of COVID-19 and while most people who’ve had the virus lose taste and smell for a while (this is called anosmia), many get it back. However, many people are experiencing a change in taste or smell months after having COVID-19.

I am one of those people, and I learned more about it from this article.

How Long Does it Take to Recover?

Through my own research, I’ve seen recovery times span from just a few months to an entire year after having COVID-19.

There doesn’t seem to be a large number of studies on this just yet, but one published in JAMA Network Open on Jun 24th of this year shows that the recovery time in the patients studied was around one year post-COVID. Without going into all of the details, the results — taken from the study directly — are below:

Of these patients, 51 (52.6%) underwent both subjective and objective olfactory test, and 46 (47.4%) underwent subjective assessment alone (Figure). After subjective assessment at 4 months, 23 of 51 patients (45.1%) reported full recovery of olfaction, 27 of 51 patients (52.9%) reported partial recovery, and 1 of 51 patients (2.0%) reported no recovery. On psychophysical testing, 43 of 51 patients (84.3%) were objectively normosmic, including 19 of 27 (70.0%) who self-evaluated as only partially recovered (all patients who self-reported normal return of smell were corroborated with objective testing) (Table). The remaining 8 patients (15.7%) with persistent subjective or objective loss of smell were followed up at 8 months, and an additional 6 patients became normosmic on objective testing. At 8 months, objective olfactory assessment confirmed full recovery in 49 of 51 patients (96.1%). Two patients remained hyposmic at 1 year, with persistent abnormalities (1 with abnormal olfactory threshold and 1 with parosmia causing abnormal identification). Among those who underwent subjective assessment alone, 13 of 46 patients (28.2%) reported satisfactory recovery at 4 months (7 with total and 6 with partial recovery), and the remaining 33 patients (71.7%) did so by 12 months (32 with total and 14 with partial recovery).

A simpler version: Near-complete recovery occurs at approximately 1 year.

So, even though living with this is definitely not ideal, there does seem to be a light at the end of the tunnel for folks like me who have anosmia/parosmia. Until that happens, I’ve been trying to find ways to lessen the unpleasant effects. I’m not sure whether anyone will find them helpful, but I’m going to briefly touch on them anyway.

Lessening the Effects of Parosmia

I am no doctor, nor have I spoken to one at length about how to live with parosmia. I’ve been doing whatever I can to lessen the effects for myself. Because there’s really no way to treat this oddity, I’ve been keeping track of foods and other items that don’t taste and/or smell right to me. This doesn’t seem like much, but if I can consciously keep away from the foods that make me ill because of parosmia, I’m going to do so.

My biggest issues with taste/smell are that 1) nothing smells how it should, and 2) the two most common “tastes” that I encounter are metal, bleach (the only way I can explain this is “a taste like the smell of bleach”), and something I have yet to identify or find a way to explain. There are things that smell like literal shit. There are some foods that have no taste at all.

I’ve been working to keep a list of what tastes the worst to me, simply so that I can try to avoid those items whenever possible. These are usually the things that trigger my gag reflex because they have such a strange taste now.

My list currently includes:

  • Tomatoes (or anything tomato-based)
  • Most cheese (excluding provolone, Swiss, and goat this far)
  • Italian-seasoned anything
  • Coffee
  • Grape-flavored anything (but actual grapes are fine)
  • Sour cream
  • Cream cheese
  • Italian sausage
  • Most seafood
  • Milk chocolate

Some of these foods are tolerable when other flavors are mixed in, such as tomatoes in a pasta dish with other veggies and meat. Coffee is tolerable when it isn’t black, but I still drink less than I used to because of the way it currently tastes. Coke Zero also tastes strange, but it’s not overwhelmingly bad.

I wish there was more of a way to treat parosmia, but unfortunately, there just isn’t. Instead, those of us who have it get to play the waiting game. There has been a growing contingent of folks with post-COVID anosmia/parosmia who have been trying aromatherapy to help regulate smell receptors. Salon published an article about it in May of this year.

It seems that evidence for it is pretty thin:

“Smell training is somewhat questionable, frankly,” says Richard Doty, director of the University of Pennsylvania’s Smell and Taste Center. While the therapy has “caught the imagination of laypeople as well as scientists,” he says, the evidence is “pretty weak that it has any effect.” Doty, a physician who has published widely on olfactory dysfunction, suggests that smell training “doesn’t work if you compare to spontaneous resolution” of smell in the absence of training. In other words, any improvements may have occurred naturally over time. And other researchers note that it isn’t yet clear which, if any, patients might benefit from the intervention.

And so, I wait.

I’m hopeful that things will return to normal sooner rather than later. Without hope, what is there?

If anyone reading this is also experiencing anosmia/parosmia and would like to chat, leave a comment below. At the very least, it’s always a comfort to know that you’re not alone in this.