From Perfume to Poison: How Parosmia Changed My Life
(Image via Unsplash)
I remember when I first heard about Parosmia. It was late December in 2021, and I was scrolling through TikTok, which I still spend waaaay too much time doing. I came across this TikTok of a young woman speaking into the phone. She introduced herself and said she got Covid ten months ago.
She then went on to say that she’s been “experiencing a post covid symptom that has only been imagined in literature in the past as a punishment for those that go to Hell. I’ve literally been experiencing a living hell for ten months.”
If you’re anything like me, that captured your attention. Curious to learn what this torture was that she had been enduring, I watched on. She explained that she has Parosmia and explained to viewers what the condition is.
“Parosmia means that anything that I taste and smell has become distorted to the point where it smells like and tastes like rotting flesh and garbage and sewage.” That made my eyebrows lift. Dang, that sucks.
“Nothing That I’ve Ever Experienced Before Is Equally As Bad”
“This is the way that I describe it; however, it does not taste like rotting flesh and garbage and sewage, it is a completely different taste and I have no idea how to describe it because nothing that I’ve ever experienced before is equally as bad.” While that somewhat confused me, I tried to imagine a new, disgusting taste I’ve never come close to experiencing.
The dramatic video continued as she described her mental and physical health while suffering from the condition. “I am not okay. And I haven’t been for ten months because it’s literal torture. I have shrunk back to the size that I was when I was 14. Not by choice, but by a forced disorder because everything tastes that bad. I have zero relief. Even water is disgusting to me.”
I paused the video, trying to imagine myself super thirsty but unable to swallow water because it tasted so bad. Again, it was hard to imagine. Putting myself in her shoes was not easy—it was just something I knew I wasn’t really comprehending.
Unable to eat or drink anything because it all tastes repulsive? Wow, that really would be my own personal living hell. As a foodie, the entire eating experience holds a special place in my heart. It’s a coping mechanism, a safe space, a happy place. A lot of my daily thoughts are centered around food!
Don’t Wanna Get That
So almost more than being scared of Covid itself, I was scared to get Covid and come down with this condition. It sounds ridiculous, I know, but it’s true.
Fast forward to almost exactly a year later. In December of 2022, I finally caught the dreaded Covid—the TikTok long forgotten. I was incredibly sick for over two weeks, missed a bunch of work, and finally understood how people were dying from this. I’ve never even been close to being that sick in my life. It was miserable.
I did finally get over it. I thought that was the end of it. But it was far from over. I discovered I was pregnant with my second child three months later—yay! Here’s where it starts going south.
About a week after finding out I was pregnant, my smell and taste started becoming distorted. The first thing I noticed was my peach mango water tasted like my shampoo. That’s odd. Guess no more fruity water for me.
Then more smells and tastes started messing up. Any kind of food being cooked was…unpleasant. Strong smells like gasoline, smoke, and perfume began to assault my nose. It all started off mild, but began to morph into affecting my daily life more and more.
It’s NOT Morning Sickness
Because I was pregnant, I blamed it all on morning sickness. I didn’t experience this when I was pregnant with my first, but I knew of plenty others who had these distortions and would gag and throw up if they smelled any kind of food. I made a couple of Facebook statuses about it and received plenty of comments from mamas who had gone through the same thing.
As the weeks wore on, it became increasingly worse. Instead of gaining weight with my pregnancy, I was losing it. And pretty rapidly. There were only a handful of foods I could eat—watermelon, powdered donuts, vanilla ice cream, and cucumbers. As a southern girl, I was thankful that sweet tea was not affected by whatever was going on.
Anything else I put in my mouth would make me gag—violently. Believe me, I tried to force some other foods down, but it wasn’t working. Besides the food, everyday smells would haunt me. Grass (not even freshly cut, just grass in general), the shower (the water, soaps, and shampoos), preparing food (even uncooked), detergents (laundry and dishwashing), any kind of scented anything (hairspray, candles, perfume, etc.), animals in general (and we own a few animals)—it all became unbearable.
I couldn’t stand to leave my bedroom at one point. It meant I would be met with some sort of smell that would leave me grabbing at my nose, trying to block it from entering. On top of that, I was so weak, it was hard to stand up. At my lowest point, the only thing I could bear to eat was plain white rice from the only Chinese place in town (we tried other white rices).
Hey Guys! I Lost 30 Pounds Using Parosmia And You Can Too!
At 18 weeks pregnant, I had lost 30 pounds. And I was skinny. For reference, I’m about 5’ 10” and an ideal weight for my body is about 140-145 pounds.
Can you guess which one I’m five months pregnant in? Because if you guessed the one on the right, you’re wrong.
(image via my phone; Never thought these would see the light of day, so don’t judge)
I weighed 125 pounds. And I had a baby inside me. I hadn’t weighed that little since junior high. It was not healthy for me.
My face was gaunt, my hair was falling out, I could barely stand up, I could not think straight. I also started to develop a hearing disorder (which I still haven’t quite figured out) in which it was like my ears needed to pop, like when you drive up a mountain. Except it was nearly 24/7 and there was no way to relieve it. It was hard to even understand conversations sometimes.
It had been a while since I stopped believing this was a pregnancy thing. I went to the Google, desperate for answers and came across the word—Parosmia. The girl on the TikTok flashed through my mind. There wasn’t much out there on it, but the few pages I found about long-term Covid parosmia filled me with both hope and dread.
I read one blog where a woman described her experience and wrote out a list of common “okay” foods for people suffering from Parosmia. I could handle few of them since the onset of my condition, but now they were all off the table.
I watched a couple of YouTube videos that mentioned things like smell training, nose clips, and SGBs (Stellate Ganglion Blocks). One video I came across mentioned a FaceBook help group that I decided to join. I could not believe how large of a group it was.
I forget how big it was when I joined, but today it has 51.2k members. That’s a lot of suffering people. I finally didn’t feel so alone. I scrolled the feed for a while, getting a feel for others’ experiences. Many of them told their stories and listed things they could eat. Others mentioned things they had tried to try to cure the condition, with most of them ending in failure.
After spending a good amount of time in the group, I came to realize I had a pretty severe case. Very few had as few safe foods as me. Many were seeking SGBs (an injection in the neck) and while some were successful, the majority were not.
Mentally and physically, I had had no relief from this all-day, every-day nightmare for months. I was starving. Sounds dramatic, but I was withering away—while near the middle of my second trimester. I was in a dark place. A really dark place.
99% of the people who posted in the Facebook group said that they had been suffering from parosmia for months. Some for even years. Many of them had gotten Covid at the start of the pandemic and had been living with the condition ever since with no signs of getting better.
It’s something people don’t recover from.
It was easier just to tell people it was severe morning sickness. Or to even go a little further and mention Parosmia. When they’d ask what that was, I would just say everything tastes like garbage.
That was an understatement. But it’s hard to convey the magnitude of disorder, and I soon gave up trying to.
My Own Living Hell
I thought back to when I first saw that TikTok so long ago and had considered her condition something that would be my own living hell. And here I was—living it.
I was losing my only safe food. It was hard to stomach a couple of bites in a day. I was going days on end with just one or two bites each day. I could not even function.
It’s not something I’ve discussed with anyone, but my mind frequently jumped to “ending the condition myself” if things stayed the same for much longer. I was pretty much bedridden, with no light at the end of the tunnel.
It must be hard for someone who hasn’t experienced this to understand—to realize that this wasn’t an overreaction. Things were truly that hopeless. I was not in my right mind and was suffering greatly every second of every day.
I had a husband and toddler to be a wife and mother to, with another on the way. I had a job I was trying to keep. I had a life I was trying to live. But everything was crumbling around me more and more each day.
Now what I’m about to tell you is going to leave you judging me extremely harshly. You’re going to think things like Why didn’t she try that sooner? and It couldn’t have been that bad if that was what fixed it. But just hear me out.
With something so severe, I did not believe something so simple could have helped in the slightest. In fact, it helped next to no one in the Facebook support group. But I was desperate. With my sister driving in to stay with me, I asked her to pick up a nose clip on her way through town.
And it worked. Tears streamed down my face as I slowly tried eating food that I hadn’t eaten in months. Although some of it still tasted like Covid (which is what people with the condition have come to call the indescribable taste), most of it had no taste at all while I was wearing the nose clip.
Since I couldn’t taste it, I could eat it. And it was one of the happiest days of my life. I slowly began to return to my normal self.
(image via Unsplash)
I’m One Of The Lucky Ones
I finally began to look like I was pregnant. I was able to go to birthday parties, weddings, and other events again. Heck, going outside period was bearable again. And the longer I wore the nose clip while I ate, the more my correct sense of taste and smell returned.
It took another multiple months, but I was finally able to begin eating again without a nose clip. Things tasted off, but edible. Today, there are very few things that remain “off”.
I am one of the lucky ones.
I had a severe case, yet I was lucky enough to suffer only months with the condition. Many have suffered for years and will continue to be faced with it.
I wrote this article for three reasons. To raise awareness, to give hope to others, and to simply tell my story.
To Raise Awareness
While it affects so many people, nearly everyone I have spoken with has never heard of it. And no one understands how deeply it affects those who have it. You wouldn’t believe how many comments I got like:
- “Wow, I wish I had that condition. I could lose a few pounds”
- “Look on the bright side, you look great!”
- “Oh, when I was pregnant, I couldn’t eat cooked meats. Couldn’t even be in the same room!”
- “I know how you feel, when I got sick I couldn’t eat *insert a single food here* for the longest. It still doesn’t taste right!”
- “You just gotta make yourself eat! It might be hard, but you gotta get something in ya.”
- “When I got Covid, I couldn’t taste anything for weeks!”
- And my favorite, “Some people are so busy, they live off of coffee and granola bars, you’ll survive!”
While I know none of them meant anything negative, it was hard to take these comments any other way. If they truly knew how detrimental this condition was, they would have never thought to say any of those things.
In going back to try to find the blogs and videos and TikToks I found when I first discovered Parosmia, I’ve learned that there is so much more content out there today than there was when I was looking for answers. I could barely find a handful of articles about it before, and now there are tons of health websites, forums, and personal blogs talking about it. That is such a good thing.
To Give Hope
I mentioned that when I was learning about my condition, it looked like something that was incurable. Very few people had ever successfully rid themselves of or simply gotten over Parosmia. Some had learned to live with it, but the majority had a similar outlook to me—this is the worst, and it isn’t going to get better.
I’ve commented on so many posts and made my own posts in the support group about simply trying a nose clip. While I know it hasn’t been helpful to a majority of people, if it helps just one other person, it will have been worth it. I want them to see that there is hope and that there is a possibility of living life again without Parosmia.
To Tell My Story
This was one of the worst times of my life. I’ve only ever been in a place that dark one other time in my life, but I’m not looking to trauma dump on you that much today—HA! But that’s what those months of Parosmia were—plain old trauma. It may seem way out of line to say this, but I truly feel like a survivor.
As I mentioned to my husband, mom, and sister, if I knew that there was a set amount of time it took to get over it, I could have handled it so much better. Even if it would take years. If I knew it was going to end at some point and not be something I was going to be stuck with for the rest of my life, my outlook would have been much less hopeless. But I was truly believing that it was my life now and nothing was going to get better.
I was close to getting a feeding tube. I could not get food into my stomach and was about to take extreme measures. Trying to imagine the rest of my life revolving around how to make sure I was getting enough food to survive was depressing. And how to stay away from smells—guess no more public outings? Obviously not something I ever envisioned for my life.
I’ve said it before, but I’m going to say it again, if you haven’t suffered Parosmia, you cannot judge someone’s thoughts and feelings for having it. So many times when I was making Facebook posts, just trying to air out my frustrations, I felt so whiny—it’s a smell and taste disorder, it’s not like it’s something horrible like *insert something you would truly feel sympathy for*. And I get that. Because I would probably think the same things.
But now I know better. If you’ve read this far, thank you for sticking around. I hope your new-found knowledge will come in handy at some point in your life, whether you share it as a resource for someone else suffering from it or you use it for yourself, I hope that this article has been or will be beneficial.
If you don’t mind sharing this on your socials, I can guarantee there is at least one person on your friends list who is either suffering from Parosmia to some extent and just doesn’t know what’s going on or knows someone who is suffering from it. Like I said, so many have it. It’s just not well-known. Spread awareness and share this article. Thank you.
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