I have congenital anosmia (no sense of smell), ama
In english: I have a little stub where my olfactory nerve is supposed to be. My nose has all the receptors, my brain has the capability of processing smells (and I get """phantom""" smells) but there's nothing connecting them, meaning I've never smelt anything and I probably won't, unless some miracle stem cell research comes out or something.
When I say phantom smells, I mean I occasionally get really weird feelings in my nose. I can't really describe them, its like a weird strong tingling. I can't identify them to anything, because I have no reference to what things smell like. It's not like it's different each time either, its like the feeling of pins and needles in your legs I guess, it doesn't really feel like a "thing". It happened more when I thought I was curable, like sometimes I'd be making a coffee and be like, huh is that a smell???, but basically it was always just my brain lying to me.
I can "detect" stuff though. Like, when I'm near the sea I can taste salt in the air, and I can feel "heavy" gasses, I'm not sure if thats the right word, but I can tell when I'm next to a fire or spraying brake cleaner or similar. I probably can't differentiate them if you somehow bottled them though. I don't get anything for gas so if I leave the stove on, lol im dead. The tip of my nose is kinda sensitive to stuff too, my friends were smelling stupidly hot hotsauce and they were getting effected by it while I was 100% immune, so I put some on my finger and put it up my nose as a joke and holy fuck please don't ever try that, it's much worse than eating it.
I can tell my sweat is salty too when I accidentally breathe some in while exercising hard.
I still have tastebuds, I can taste food on my tongue. I can differentiate a lot of things. Obviously my range is limited though, like honey soy wings from a korean place near me tastes kinda like peanut butter. I still have foods that I like and foods that I don't like. I think I'm a bit more judgemental about how a food looks than others. I don't mean presentation, how it actually looks. I refused to eat eggs for the longest time because of how raw eggs look, and the look of jelly and jelly like things is icky to me.
Something most people don't realise is how important smell is for socialising. I struggle to read a room sometimes, I have massive confidence problems, and I struggle a lot with intimacy. Not much research is done on anosmia because it's incredibly invisible to normal people, but one thing thats come out is that people with it (congenital and those who get it later from say, a headinjury or something) have less than half the number of sexual partners in their lifetime. We also suffer heavily from depression and other mental illness because we don't get the free endorphins from smelling something nice, or triggering a pleasant memory, or something like that. Eating is basically a nonevent for me, I usually fake excitement over food to fit in, and because people like it when you compliment their cooking.
Hygeine, I'm really anal about showering before I leave the house. Noones ever told me I smell bad, and I annoy my friends asking if I do, but sometimes that means I might shower 3+ times in a day if there's even the slightest hesitation about it. I'll change my clothes if I got a little bit sweaty, if I've been working with something that smells I'll be very hesitant to do anything till I'm clean if I have the option to be. I used to be a barista and I'd get coffee grinds on my clothes and I'd always worry about not going straight home afterwards because I didn't want to smell like coffee, even though its a good smell that people like. My house probably reeks though, idk, I keep it clean but I avoid having people over as much as possible. My need to know that I'm not smelly has lead to situations where I'll go on a weeklong camping trip with my friends in a campsite with no running water or showers and I'll be the only one to insist on using the camping shower the whole trip, no matter how cold it is.
Ive had a lot of people say to me things like, well atleast you aren't blind, and okay yeah I can drive and walk down a street, but it's pretty offensive to say dissmissive things like that. It's still a disability and its not a competition. It's easy for people to empathise with the blind and deaf because you can cover your eyes and walk into a wall, or block your ears and not be able to communicate with anyone. But you can't turn off your smell like that, and the effects aren't as obvious
Ask me anything, be as intrusive as you like, I don't mind talking about it.
You know how hes an actor now?
I've heard that strawberries use olfactory tricks to taste much sweeter than they actually are. Do strawberries taste sour to you? Lemons and strawberries have a close-ish pH, but I would say most people find lemons extremely sour and strawberries not sour at all. Do you experience the same?
Also, are strawberries about as sweet as oranges to you?
I haven't had a strawberry in a very long time, I just kinda look at them and think nah don't like that. So they probably taste bad to me but I can't really remember. I really like sour stuff though, lemons are delicious, I'll go buy some strawberries and get back to you
Have you, uh, ever peeled a lemon and ate it?
Yeah, I like it. I like straight cordial and other really strong flavours like that too. Maybe its because I never get strong feelings like that otherwise, maybe I'm just a retard, but I mean people like the burning warmth of alcohol so maybe I'm not that weird
Have you ever thought of eating one in public to see people's reactions?
I do stuff like that to fuck with my friends all the time. Most recently we cooked a big batch of hot sauce and they were unable to even be in the room while I was able to just stand there and laugh. They didn't appreciate it at all but I found it hilarious.
what is it like to experience a fart?
do you sense it at all with your tastebuds?
you could use it like a superpower and go do something similar to fear factor or jackass.
Nothing at all, I used to fart all the time and made no effort to be polite when I was a kid because I didn't know.
Have you ever asked people what certain things smell like? If so: what’s the strangest description of a smell that you’ve heard?
I do ask and people normally just give simple answers, I asked my friend if brake cleaner smelt the other day and he just said it smelt petrol-y. The most I've gotten is someone saying "it smells, but its not a bad smell, but its not like its pleasant, but its a strong smell". I guess the people I ask don't feel the need to give me more and I don't press them either, but I would like it if people did tell me more when I ask. Its kinda like explaining colour to a blind person though
Sometimes certain foods taste like they smell. I ate a lavendar macaroon once and oh boy it was super pungent In taste and it was exactly the way it smelled. Idk how much of a part smell had to do with taste in that instance like if it travels through the back of your throat whole eating it
Thats basically how I understand smell, that its like tasting something but you feel it in your nose. Cool that lavendar smells like it tastes, I'm gunna go find some macaroons after the holidays
A lot of ppl are being very imprecise when smelling
It's most often just a binary thing : good, pleasant Or bad, convulsive
After this, the just scale the good or bad, like on a scale from 1 to 10.
To really precisely taste with your smell, you are either a minority or need to take a lot of time And they will probably fear of being wrong .
For your house: throw open every window for 5 mins, then there should no Problem unless there are week old trash bins or kilos of used sport's wear laying in the open Also most flats have a distinct smell, it's not a problem at all, you only notice it a split second
That makes a lot of sense based on what people have said to me (the part about the binary smell etc). I've watched videos about wine tasting and fake/real orange juice and even professional wine tasters suck ass at telling the difference lmao
I do have the windows open etc and go through the motions but like, I can't know its clean, ya know?
Yeah pretty much. Tasting but with your nose. I would advise against the lavendar macaroon though, it was the opposite of tasty and the others I tried werent very flavorful. Have you ever tried putting like a straight up rosemary leaf or anything in your mouth? Same effect
Never Rosemary but mints yeah, I used to put my nose in mint boxes and inhale when i was little. Being able to feel that is why I thought I'd be able to fix my smell one day, but welp can't regrow a nerve
Brake cleaner smells like some harsh, alcohol-containing solvent with notes of aerosol and rich, hydrocarbon undertones.
I wish I got stuff like this more
Have you had issues with not noticing that food like milk has gone bad?
I'm fucking terrified of it. I've thrown away food and milk thats been on the bench a couple hours and still feels cold because fuck that I'm not risking it. There was one time where I accidentally drank milk with solids in it and was freaking out for a while until someone told me it smelt fine and it turned out the fridge was a lil too cold and it had frozen.
How and when did you discover you had this condition? When you were little and heard people talking about different smells what did you think they meant?
I have a strong memory of being in grade 2, and the teacher telling us that lady beetles give off a really foul smelling yellow liquid. I found one and poked it a bit and it squirted on my hand, and I smelt it and thought the teacher was lying. Idk why that stuck with me. I guess I always kinda assumed that I could smell, why wouldn't I, but whatever I was sniffing didn't have a smell. It wasn't until I was 14 or 15 or so and becoming more and more aware that I was like, hangon wait everyone says this smells and I get nothing from it, what??? I didn't see a doctor about it until I was 20 and then it was 2 years on a waiting list to confirm it with an MRI. I had to figure it all out for myself.
Could you please explain the two year waiting list for an MRI? I’m like baffled it took that long.
Public health system, and the fact it's lifelong, and the fact that it wasn't something that was an immediate danger to my health like cancer. I was low priority, which is fine imo, I didnt pay a cent
Why do you struggle to read a room?
Obviously I'm not expert on smell but you know the phrase "smelling fear". I don't get those subtle things like that. I wish I could explain more, the doctor who reviewed my mri had a chat with me about it and I remember sitting there thinking that it made a lot of sense, but I don't remember much of the coversation. I've read other people online talk about it too. I'm not too sure what the underlying science is sorry.
The loss of confidence from not knowing if you have bo and bad breath does not help at all either.
Wow. So I got a head cold this year and, for the first time in my entire, almost 40 years of existence, could not smell or taste anything. Like, complete and total, you could fart in my face and I wouldn't smell it. After about a week, I was feeling like I was gonna go insane. It's been 3 weeks now and it has affected my mood in a way that has been shocking. I've been so irritable, depressed, and quick to snap. I have told my family, "my god, I had no idea what a handicap this could be." The reality is I fucking hate this. I don't know if my breath stinks. I made my favorite Chex Mix and can't fucking taste it! I bought my favorite strain of weed and it was goddamn nearly worthless, because evidently, smelling the terps is actually what affects the experience. I am actually just starting to be able to smell again and that just can't get here fast enough. Thanks for doing this AMA, and I really can at least begin to sympathize with your condition, at least more than I could before, and...well I'm sorry for you, because it totally fucking sucks to not be able to smell anything.
Go to the doctor right now, I've heard about people like you having their smell irreversibly damaged by viral infections! Shit I hope you're okay.
How do things taste?
Samey I guess, but I taste a lot with texture. I can't really compare it to normal.
I realize it may be silly to assume to this extent, or even think that it'd be possible to convey through language, but here it goes:
From all the (anecdotal) data I seem to have about people with sensory disabilities, I gather that while one or a number of their senses numbs or shuts off, the others seem to go into 'overdrive' to pick up the slack.
Have you noticed any signs that some of your other senses may be 'enhanced' due to the absence of the olfactory? If so, could you identify the senses which became more acute, and possibly the ways in which they did? Also, how could you tell (what reference did you use)?
Bonus followup question: would you argue that the way you perceive the world is worth trying out for more than an empathy exercise? As in, as you live and have your experiences, would you say they're on par or higher in overall enjoyment/quality as those of your peers (purely from superficial observation obviously)? Does this sensory deprivation perhaps enhance your experience in ways others can't attain? Have you gained any specific insight/wisdom that may have stemmed from or due to your unique condition?
It's a really common thing for people to say their other senses are better, but it's not really true. Your born with the senses you have, and they are only so strong. But when you lose one, you pay more attention to the rest. So my sight and hearing and touch aren't any better than yours, but I use them more so I get more from them. Its not like turning the sensitivity up, but more like not throwing away as much input as a normal person does, if that makes any sense.
I tend to look around more than other people, and I pay more attention to random noises. You know how its just a thing that most people never look up? I do. I had a theory that smell as a sense gives you a lot of information about your immediate environment and I subconsciously look around to compensate, but I might just be someone who does that anyway, I don't really know.
I don't think its worth it to try block your sense of smell to see what its like. Its probably going to be really hard and you'd need to do it for a while to get an idea of what its like to live with. I think its definitely made me more understanding of others and their struggles, especially other invisible struggles, but I don't think thats an anosmia exclusive.
So you can’t smell Tetrahydrothiophene either? Isn’t that dangerous?
I had to google that, its an additive for lpg made from stuff in garlic and onions? If I leave the stove on I'm probably going to blow myself up yeah, though I'm anal about making sure its off.
So how do you smell?
How does sneezing feel in your nose?
Wow, "the one who smelt it, dealt it" really doesn't apply to you, does it?
I mean, I didn't really know how bad they smelt so 99% I was the one to deal it lmao
Has there ever been a time where you either really wished you could smell, or were very thankful you couldn't?
Truly thankful, never, but there have been times where somethings been gross and I've joked about it. I wish I could pretty much every time someone brings up a smell, good or bad, but especially the bad.
How would you be able to learn to sing and play guitar?
Same as you?
You’ve never been able to smell or it developed?
I swear as a kid I was able to smell but anymore I can only smell things when they are very strong, I’ve lost most my sense of smell.
Go see a doctor, what I have is only 1% of anosmia, its very very likely you have nasal polyps or an infection or something! It's probably fixable for you. Good luck man
So, is it safe to assume you've never dealt it?
Do you ever take time to stop and smell the roses?
sometimes i sit in nature and think about how pretty it is
My house probably reeks though, idk, I keep it clean but I avoid having people over as much as possible
I used to know someone with anosmia and her apartment was really clean and smelled completely fine, I never got around to asking how. Are there any specific techniques you use to "detect" if something has more of a "bad" smell or do you always go by what others say?
Just going by what others say. When people say something smells or doesn't smell it just sticks in my mind and I remember it next time it comes up.
Would you marry Zoidberg?
Maybe if he was a lady
Are there certain flavors or taste that appeal to you more than others? Are you totally "smell-blind" or does it only affect certain taste more than others like bitter vs. sweet, etc.
Saw your comment about getting anti-disability comments..not to be rude but perhaps people have a hard time understanding how you are affected by your lack of smell throughout the day (just a thought..maybe you could explain more?)
Maybe they are jealous because smell affects how you taste or experience food, which plays a role in weight gain or loss.
When did you notice that you were "smell-blind"?
I'm 100% smell blind, to use blindness as an analogy imagine I have eyes but there's nothing connecting my eyes to my brain. My smell receptors are there in my nose, I didn't grow the nerve to plug them in if that makes more sense.
My take on the disability stuff is that I'm not going to convince people who think it isn't one at all, and I don't really want to put the mountain of effort in to begin changing their minds. It is a disability though, maybe smell is less important now than it was in prehistory but smell is a massive safety net, for the stuff you eat, the stuff you drink, your environment around you. It's an absolutely massive detriment to have the rug pulled out from under your confidence, which has big effects on you socially in your career. The one thing every person on earth has in common with eachother is excitement over food, which is something I don't understand very well at all, to give 1 example of a social impact. Another is the fact that people don't like smelly people and theres a very big chance I will leave the house reeking. Its a massive source of stress and long term stress has big health impacts.
People with anosmia are also incredibly prone to depression, have big issues with intimacy and feelings of belonging, and have problems with memory.
This is just a part of the ways it impacts your life. Let me put it this way, you have 5 senses normally. I have 4. I go through life experiencing 80% as much as you do, more if you consider that our senses aren't isolated and are greater than the sum of their parts. I depend on other people for a lot of things that I absolutely can not do myself.
You could say something like, well we have fridges and gas alarms now so actually it doesn't count. I'd counter that with asking you if deaf people who can hear with a hearing aid would count as disabled to you. I don't need a chair and I can walk down the street without needing a stick, but disability is a spectrum, not a competition. My one just happens to be pretty invisible so it's harder for people to understand it. I understand that, and I don't resent it, but I do resent it when fully abled people gatekeep and refuse to hear otherwise. Its like, who are you to decide what my life is like, you literally have no way of knowing.
I have 1 friend who thinks it's barely anything at all but his fiance has a brain tumour that causes her siezures that they both consider to be a disability. I don't say anything at all, to keep the peace, but it does irk me. I could very easily say to him that the 99% of the time she's not having siezures she's fully normal and therefore it doesn't count, which is absolutely wrong and not at all what I think, but how would saying that to them be any different to him thinking I'm not disabled. Just because you can't see the immediate effects in front of you, does not mean it's not there. And over the course of my life, it will have an impact. I accept that and do everything I can to not wallow in that fact and still live life to my fullest, but it's undeniable that it will have negative effects and I will be less well off socially, romantically, in my career, and with my health both mentally and physically, than I otherwise would have been. I'll also have experienced less in life. In that way, yes, I absolutely think its a disability.
What’s the one thing you would like to smell the most?
You probably expect me to say the smell of a flower or a good meal or nature or something lovely like that. But honestly, I really really want to know what the bad stuff smells like because thats what everyone freaks out about. Like, a really pungent fart, durian, very old milk, all the gross shit. Just to see what the fuss is about.
Did you read the book or watched the movie. Perfume Story of a murderer? What did u think of it?
Never seen it
So does this affect your taste? I remember reading in a bio textbook that taste depends smell so I was wondering if very fragrant food still taste as good to you?
I don't get anything from the smell side of it but I have tastebuds still, and I usually taste with texture too I guess
I have anosmia as well, although mine is from head trauma. I miss all the different smells of good food, a garden, all the things you take for granted.
What surprised me most was how little research is being done to treat anosmia. The other senses all get support and are looking for ways to reverse the condition, but if you lose the sense of smell, the doctors just kind of shrug and tell you there is nothing to be done.
Yeah to most people its completely invisible. In germany you don't even qualify for any sort of disability assisstance, but people with scars do. Pretty lame tbh
Is it posible to have some degree of this without not being able to smell at all? If so, i think i have it
Yeah not having a nerve at all is ~1% of anosmia. Go see a doctor, you might have nasal polyps or another condition they can fix!
My old co-worker at a summer camp I worked at has the same thing, he says his biggest fear is gas leaks, is that the same with you?
My biggest fears are off food and things breaking on my car that youd normally detect with smell, like oil/coolant/power steering leaks.
When did you first realize you where the only one?
I thought that I was normal until I was a teenager and started getting more and more aware of myself of the world, and it kinda clicked in my head that I'd never had a sensation in my nose and that I was different. I had to figure it out for myself and it was v confusing.
So you don't know what anything smells like? Roses, diesel, something burning etc.?
nothing at all, I just assume they smell similar to how they taste and thats really the limit of my understanding.
So do you cook?
I'm perfectly fine with having very simple meals forever. Normally if its more than 1 or 2 ingredients its because I feel like I need to be healthier. My staple breakfast is porridge, just oats and milk in the microwave for 2 minutes, the milk goes a lil sweet and its nice, but people think it's insanely bland.
Do you feel like you miss out on certain things, like smelling a warm soup, or are you content with how you live?
All the time. I want to smell the bad just as much as the good, maybe more
How do you call people who can‘t smell? There‘s a word for people who can‘t hear (deaf), for people who can‘t see (blind) and people who can‘t speak (mute). So what‘s the word for people who are not able to smell?
I guess anosmic, but I don't think theres any sort of slang name
Yes it is. It's one of your core 5 senses. Go away.
I would like to know if you can smell what the Rock is cooking ?
View HistoryShare Link