I wanted to do a special blog post today to share a bit about my experience with Long-COVID and parosmia. I’ve felt called by God to try to help others dealing with this horrible condition, even though I am still very much in the trenches myself. And for those of you who have no idea what this parosmia thing is or who can’t even fathom what it’s like, hopefully this post will give you a taste (pun absolutely intended) of what this condition is like.
First of all, what the heck is parosmia? It’s a distorted sense of smell that causes most things to smell either like feces, rot, or burned chemicals. It’s caused by damage a virus (looking at you, COVID) does to the nerves in your nose. It can last 6 months, or much longer. Basically, the nerves are coming “back online,” but they’re doing so in a distorted way, hence the distorted smells. And since smell and taste are so closely linked, having parosmia also means having a distorted sense of taste.
I had COVID in February of 2021. My husband and I got sick within 24 hours of each other, and when he couldn’t smell anything a couple days in we knew for sure what it was. I thought I lucked out. As we battled the fatigue and headaches and dizziness and sinus pressure and sore throats and trouble breathing, I could still taste and smell just fine.
At the start of the third week, however, my husband began improving and I developed a high fever and lost my taste and smell all in one day. (To top it off that perfect day, my dog had one of her epileptic seizures that morning.) My taste did return after about a week, once I turned the corner and started to feel better. My smell, though, was just gone.
Two and a half months later, on May 2, my parents came over for dinner and I made tacos. My husband and my parents kept saying how good everything tasted, but I was confused. Something just felt off. But I couldn’t figure out what.
The next couple days I found it hard to drink my coffee. Was I imagining that burnt taste? Something was wrong with that breakfast sandwich; I guess I’ll just throw it out. No, something is seriously off about this coffee. Ew, what’s wrong with that? Oh my gosh, I can’t eat this. Are you smelling that?
Finally, I Googled. “Weird taste COVID.” The answer: parosmia.
I still can’t believe that was only six and a half months ago. To me it’s felt so much longer. I can’t even remember what most things are supposed to taste and smell like. Or even what life with five full senses is like.
Still not sure what people with parosmia are going through? Let me paint you a picture:
First, imagine your favorite smells in the world. For me, the best smell was my dog. Whenever I’d have trouble with anxiety, her scent was the thing that could calm me down. I’d sniff the top of her head or the back of her neck, and I’d instantly feel calm. What is it for you? Now imagine it being ripped away from you. Oh and replaced with rotting meat. That’s what my dog smells like to me now, because of her food.
Okay now think about your favorite activities. Getting coffee with a friend. Going out to dinner with your spouse. Seeing a movie. Walking around at the mall. Those are all gone. Coffee now makes you gag. You can’t be around food being cooked. Popcorn is a big no go. I guess you could walk around the mall, but be ready to hold your nose closed when you pass the food court.
Birthday celebrations, gone. Thanksgiving is going to be a pass this year. No Christmas candies or cookies. You’ll need to buy fragrance-free soaps and shampoos, or you’re going to feel queasy in the shower. And you’ll need some new toothpaste and mouthwash because mint is disgusting. Even water tastes bad (bottled Ice Mountain works for me). Don’t forget to hold your breath while starting the laundry and loading the dishwasher. And try to avoid steam.
Now let’s talk normal, every day food. Think about all the food in your kitchen. Take your phone or tablet or whatever you’re reading this on into the kitchen with you and look in the cabinets and fridge and pantry. Mentally toss out any meat, any coffee, any nuts, and eggs to start with. Get rid of anything with chocolate in it. Then go ahead and throw out any fresh produce, fruits and vegetables. You can keep the potatoes though. Those are fine. Looking bare yet? Now look at your chips, snacks, processed foods, canned foods, soups, anything filling out your pantry. Scan the ingredients lists. Does it say garlic or onion or either of those in powdered form? Even if it’s in the less than 2% of section? Gone. You’d be surprised just how often you’ll see those two little ingredients, trust me.
What are you left with? Here’s what my diet consists of:
- baby food pouches
Yep. That’s it. Every day. I live on baby food, Kettle chips, bread, shredded cheese, and Mac and cheese.
For 6 and a half months so far.
Parosmia can lead to a host of other issues. For me the main problem has been getting enough nutrition. I had to recently start drinking a Boost drink every day, because I simply wasn’t getting enough in my limited diet. I was faint and weak and could barely stand up for a couple weeks. I didn’t have strength to cook anything either.
Poor nutrition also leads to depression and anxiety. And since I already struggle with this things, they were only made worse by parosmia.
I’ve put on a little weight and can’t lose any because I can’t eat right.
Then everything gets compounded by the fact that you can’t really go out and do things with anyone.
I know it sounds like I’m complaining, but that’s not my goal here. Sure, I do complain to my husband and God. I whine about being hungry and not having any choices about what I can eat. I grocery shop with tears stinging my eyes because I miss food so much. I wasn’t even that excited to decorate for Christmas this year because one of my favorite parts of Christmas (baking and eating cookies) just won’t happen this year.
But I wanted to write this post because I wanted to share my journey. I wanted those who don’t have parosmia to understand what we sufferers are going through. And I wanted to share some of the hope I’ve found along the way.
First, if you have parosmia, know that you are not alone. It’s a very lonely condition. It was so disheartening to me that my doctor had never heard of it. The people around you can think you’re making it up. Your friends and family maybe won’t understand why you can’t make plans with them. It’s okay.
Second, do what you have to do to get nutrition. I’ve felt so guilty so many times for the large grocery bills the last few months. Boost drinks cost a lot. Baby food even more. Not to mention all of the food I’ve wasted by trying things that end up being disgusting to me. Listen—this condition is not your fault. And you need to eat the best you can, whatever it takes.
Have you struggled with body image because of parosmia? Being sick from COVID and needing to eat out so much because we couldn’t cook, plus all of those carbs and so little veggies since developing parosmia, have made me go up a size. And if you have too, know this—you are beautiful because you are made in God’s image. And those carbs are helping fuel your body when nothing else can. So go you for feeding yourself!
The main hope of course, is always in God. Jesus has come to save us from all sin and death. And He will one day heal us from parosmia! God is so good, guys. Parosmia has been one of the hardest things I’ve ever gone through, and it’s provided one of the best opportunities to rely on my Savior.
God is our strength when we are physically weak. God is our hope when we have none. “Taste and see the the Lord is good. Oh the joys of those who take refuge in him!” (Psalm 34:8 NLT). Even when we can’t taste right, we can spend time with God and find happiness in Him!
For those of you who don’t have parosmia, I hope you never have to experience “the smell.” Do your part to stop the spread of COVID. And do your best to be understanding with those experiencing parosmia.
And if you do have COVID or parosmia, take care of yourself. Email me (firstname.lastname@example.org) if you want to talk about safe foods or just need some support. Lean on God during this time. I’m praying for you.