“You know, I always thought it was very funny that losing your sense of smell was called anosmia. Anos-mia, you know, like schnoz-mia.” –J.D., Scrubs
For most of my life, I had no sense of smell. The reason was a mystery until my 30s, when I was diagnosed with a rare genetic condition called Kallmann syndrome that causes either hyposmia (having very little sense of smell) or anosmia (having no sense of smell at all). Somehow, my parents never noticed it. And, for a long time, I didn’t either. I just watched with confusion as all the other kids on my bus gagged whenever we drove past the town wastewater treatment plant on hot days. Some of the classes at our school would go on field trips there, but none of mine ever had. I figured maybe it was like an inside joke and you just had to be there. Or maybe I was the most mature kid on our bus. Yeah! That was probably it! I nodded, pleased with myself as everybody else tried not to hurl.
It wasn’t until high school, probably shopping for body spray or scented candles, when some friends pointed out that I had no sense of smell. I mentioned this to my parents and they blamed allergies. I nodded and didn’t bring it up again, but I honestly couldn’t remember smelling anything EVER. I couldn’t even imagine what smelling must be like. Were people just being overdramatic when they reacted to bad smells? Did things smell the way they tasted? Was my sense of taste off if I couldn’t smell? Was that why I once bonded with a friend’s uncle over a jar of blue cheese stuffed olives that nobody else wanted to eat?
“What if she has a brain tumor?” a friend suggested. “I think that can make you not have a sense of smell.”
My other friend rolled her eyes. “If she’d had a brain tumor her whole life, somebody would have noticed by now. It’s definitely not a brain tumor.”
Oh God… What if it was a tumor?
“I bet she CAN smell, but she just doesn’t KNOW she can,” one guy said patronizingly.
Okay, seriously?! What an asshole. “You’re an asshole,” is what I hope I said. But then I started to wonder if he might be right. Was there some trick to smelling that I hadn’t figured out yet? Could I not smell because I was just too dumb? (It probably should have occurred to me that this dude was pretty dumb and could smell fine!)
Ugh. I didn’t want to think about why I couldn’t smell. All I wanted to do as a teenager was fly under the radar and be normal. I resolved to only let a select few know that my nose couldn’t tell Cucumber Melon from Blind Melon.
Around age 20, I decided anosmia was part of what made me special. I embraced it. Occasionally that tumor comment would still cross my mind, but I was mostly happy with my mysterious ailment. I had no way of detecting a gas leak, but at least I was impervious to farts! “Have you ever seen a doctor about that?” someone would ask. And the answer was no. Because what if they could fix it? What if they gave me some pill or found a long-lost Polly Pocket doll lodged in my nasal cavity, and then I wouldn’t be me anymore? (You guys, maybe I really was too dumb to smell because my reasoning here wasn’t great. Please consider this a PSA to go ahead and get that weird medical stuff checked out. With or without it, you’re still you and just as special! And you deserve to know what’s going on with your own body!)
It wasn’t until I was an adult and investigating some reproductive issues that I discovered the two things were related. That’s when I learned about Kallmann syndrome, which equaled some challenges getting pregnant and also anosmia. I was surprised to find myself overcome with relief to finally have an answer. I wasn’t crazy or dumb. I didn’t have a tumor. There wasn’t a childhood toy stuck in my head. I was just born this way, and there were other people out there like me!
For a few years, I continued living happily without smells. Then something weird happened. Right before my 35th birthday, I was at my job filing some driver paperwork. When, suddenly, what must have been the stank of cigarettes punched me right in the face. “OH MY GOD, WHAT THE HELL WAS THAT?!” I almost screamed. This thing felt like it was filling up my whole head. I gagged. Our boss was always commenting on how everything Bobby turned in reeked of Marlboros. Had I randomly licked his paperwork without realizing it? Was that even possible? Was I having a stroke? Or…wait… Was this…smelling?! Was I finally able to smell as a birthday present from God and my first scent was somebody’s nasty cigarettes?! Ugh, no fair! I would have much preferred something fun, like the ocean or cookies baking.
I thought I might faint. Then I moved the papers away from my head. Better. But I was still freaking out. Was this a one-time thing or could I actually smell now? Why was this happening? Would everyone think I’d been lying this whole time if I told them? Was I sure it wasn’t a stroke? I tried to avoid smelling anything for the rest of the workday; it was just too creepy.
Later, I let my husband know what had happened and we started testing my nose with stuff around the house. And I began to understand some things, like “garlic breath” or why people enjoy cinnamon. Also why one of my exes was always so appalled by my cleaning everything with vinegar. “It’s cheap and eco-friendly!” I’d chirp, pulling out a gallon jug of the stuff. “BUT THE SMELL!!!” he’d cry out in disbelief. (FYI, I still like cleaning with vinegar. Also, if anybody deserved to languish in a vinegar-scented bathroom while taking a poop, it might have been this guy.) We determined that my sense of smell wasn’t great, but it wasn’t nonexistent anymore either.
I can’t remember if I ever mentioned this to my doctor. It was a few months before the pandemic started, and some things from that time are a little fuzzy. I think if I did bring it up at one of my appointments, the reaction must have been something like, “Oh, that’s cool… Do you need any prescriptions refilled?” (Maybe I should mention it next time just to be sure.) I’ve read that 10%-20% of people with Kallmann syndrome can experience some spontaneous reversal of their symptoms. But it seems like the studies mentioned online were only done on men, and I’m not sure if smell was one of the areas of improvement. I’m no doctor or scientist, and I’m not the best at reading scholarly articles. So, if anybody has an explanation, please let me know!
I still have my newfound sense of smell but don’t really trust it for safety. I seem to do best when a strong scent is right under my nose. Sometimes I’ll catch a nice whiff of something while preparing a meal, but I tend to miss weaker and more ambient smells. I’m not sure that my nose is any more likely to detect a gas leak now, and I still ask my husband to sniff milk and leftovers for me.
The main thing I’ve noticed is that my perception of flavor has changed. It’s more nuanced, I guess. The other day I was eating an apple and thought to myself that it tasted “floral” rather than just “sweet.” My next thought was, “Oh my God, FLORAL? WHO ARE YOU?” That was never a part of my vocabulary before unless it was followed by something like “pattern” or “arrangement.” I also don’t go crazy for spicy food the way I used to. I mean, I still love it, but not quite like before. It’s a difference that’s hard to put your finger on. But I’m happy to have found that I am still me, and able to enjoy something simple like a cup of coffee just a little bit more.
My Tips for Living with No Sense of Smell:
Install a harmful gas detector in your home. Ours plugs into a wall outlet and has a battery backup.
Be sure to have working smoke detectors in your home.
Read the labels on cleaners carefully to avoid harmful exposure.
Use a Sharpie to write the date on perishable foods as you open them. Because those printed expiration and “best by” dates on your food go out the window once they’re opened. (I used to argue about this constantly with said vinegar ex-boyfriend! I’m pretty sure that one day his headstone will read, “HE ATE A REALLY OLD HOT DOG.”) And, let’s face it, nobody in the history of time has ever remembered when that half-jar of pasta sauce in the fridge is from. If a sniff test is out of the question, dating foods is your next best defense against eating something that’s begun to go bad.
When cooking, go over your recipe and cut, chop, peel, measure out, and prepare as much you can before beginning. Try to have all the kitchen tools you’ll need ready to go too. If I take my eyes off the stove to work on another step in a recipe or find the cheese grater, there’s a good chance that something is going to burn.
I’ve read that people who lose their sense of smell often become depressed because they don’t enjoy eating anymore, but I think there’s still a lot to love about food. You can try seeking out foods with interesting textures, crunch, vibrant colors, and dishes where you can mix hot and cold in the same bite. Switch out regular spaghetti noodles for a fun, curly pasta. Top oatmeal with nuts and some cold berries. Dress up your salad with warm grilled chicken and brightly colored peppers, radishes, and funky heirloom tomatoes. There are tons of ways to make meals intriguing, even without smell!
If you can, try growing some of your own herbs, fruits, or vegetables. The flavors of foods fresh from the backyard are often much stronger than what you’d buy at the grocery store, and there’s such a feeling of pride that comes with eating something you grew! You could also check out your local farmers market! Both would be a great way to try out some interesting new varieties of produce.
Ask for help if you need it. Most people don’t mind at all.
Do you have any anosmia tips of your own to add? Let me know!
