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Sporadic photos and notes from a Psyche-midwife, cheerleader, anthropologist--aka clinical social worker in therapy practice. Photos are usually mine except for those of historical events/famous people. Music relevant to the daily topic is often included in a web video embedded below the blog. Click on highlighted links in the copy to get to source or supplemental material. For contact information, see my website @ janasvoboda.com or click on the button to the right below. Join in the conversation.

Sunday, August 7, 2011

A life of non-scents: Anosmia


If asked which of the five senses they felt they could most easily give up,  the average American will say smell without much thought.  

But if you are one of the estimated two million with a smell disorder, you may be thinking differently.

A (naturally) scentless sedum blooms on Iron Mountain
Goodbye to All That
Anosmia is the scientific name for loss of smell (dysosmia refers to the distortion of smell and is no big ball of fun either).  It may not seem like a big deal.  We take olfaction for granted.  But the sense of smell is interwoven in the most minute and profound details of our lives.  Memory, mate selection, pleasure, nutrition, safety:  the nose knows and informs all of it.

There are lots of ways to lose your sense of smell.  Aging is up there, and it's common for people after 60 to have a decline in ability to differentiate odors.  The decline is gradual, and may not even be fully perceived.  A sudden loss of smell indicates something more troublesome.  A good bonk on the head (frontal head injuries) can result in permanent loss of smell as connections between the nose and brain are sheared. The prognosis for recovery from this type of anosmia is not great. Medication can be a factor.  There have been lawsuits and FDA warnings against a popular nasal spray implicated in anosmia.  Some medications will temporarily alter the sense of taste and smell, but it's possible that the infections that induced the use of these medications caused the injury.  Sinus infections can cause temporary and rarely, permanent loss of smell.  And acute viral infections may result in either, when the virus attacks and kills off cells responsible for interpreting the olfactory world.

When the nose becomes just an appendage for holding up those Raybans, the effects are myriad.

The Scent of Yesterday
"When nothing else subsists from the past, after the people are dead, after the things are broken and scattered· the smell and taste of things remain poised a long time, like souls· bearing resiliently, on tiny and almost impalpable drops of their essence, the immense edifice of memory."
                                     -Marcel Proust, The Remembrance of Things Past


Catching a whiff of red cedar, I immediately "see" my grandfather on his porch in Tennessee, whittling branches he'd cut from the aromatic tree.  The scent of lilacs bring to mind my mother in her garden, and roses my 7th grade piano teacher (she wore an Avon brand rose perfume).  Patchouli recalls Oregon County Fair, high school, Eugene Market.  The smoky saddle-leather smell of Lapsang Souchong tea takes me back to long philosophical talks with an early mentor.


Smell is a powerful link to memory.  From an evolutionary perspective, that makes perfect sense. Olfactory activity is directly linked to that brainy seat of emotion, the hippocampus, which mediates learning and memory.  Other senses make a more indirect meander to storage, and thus retrieval, of what has been important to our history.  But with smell-- we know right away what we are drawn to, and what we really, really want to avoid.

Something Stinks
kelp guy smelled:  not good
Cesspools, rotting food, festering wounds, dead animals and people:  it takes a lot of exposure to get over our instinctual revulsion to "bad" smells.  Again, natural instinct serves us well, and we want to get the heck away from what stinks.  Our nose is located front and center on our face, in between our eyes and mouths, for a reason-- to keep that bad stuff out of our bodies.  Sickness has a scent, and we don't like it.  Visit a hospital or hospice, and underneath the disinfectant, you can smell it.   The smell of decay, whether of food or living beings, has a "get away" force on us, and it's much more physical than psychological.  Since odor is processed directly through the hippocampus, brain urges straight to flight mode-- sometimes stopping to vomit, in case we have ingested anything that might send us to a similar state.

People with anosmia face safety issues when deprived of this primary warning system.  If you don't smell the smoke, you may lose precious time to escape the fire.  If you can't smell rot, you may eat food that's turned the corner from life-giving to deadly.  You don't smell the odorants in gas, the mold in the shower. These are the more alarming aspects to living with anosmia.

Scents and Edibility
beet tart, Gathering Together Farm
But it’s not just the bad stuff the nose makes important.  Olfaction is intimately involved in eating.  Odors don't just notify us of spoilage, they comprise the majority of what we come to know as taste.  Without scent, our palate is limited to identifying only the hint of the most rudimentary flavors: salty, bitter, sour, sweet and umami (savory).  If you've recently had a cold, you may remember that food just wasn't that interesting.  That's because most of what we call taste is really our brain processing odors.  Blindfolded and with your nose pinched shut, you won't taste the difference between a carrot and an apple.  People with sudden onset anosmia often lose interest in food, because they cannot taste it.  It's all various stages of cardboard:  gluey, pulpy, crunchy, chewy but in the end tasteless.  An exception is fiery foods, such as chilies, which at least provide a physical sensation in the mouth as they trigger the trigeminal nerve.

You May Sniff The Bride


Smell is involved in much more than alerting us to danger, retrieving memories, or helping us differentiate and enjoy tastes.  From the time we are born we begin processing and storing olfactory information.  Babies hardwire early on to their mother's scent, and lovers often fixate on the smells of their partner.  Our sense of smell actually helps us chose an appropriate partner with whom to procreate: studies have found that people prefer the scent of those less genetically related.  Because a disparity of genes means less gene-linked disease, such partnerships result in more viable offspring.

But science is a poor poet, and lovers simply say "you smell like home."

A Less Dimensional World
Until lately I never thought twice about the scentless world.  But three months ago I checked out a book by garden writer Bonnie Blodgett about her experience with sudden anosmia.  In her case, it started with phantom smells.  Her nose was trying to make up for all the sensation she wasn't receiving, and she was tortured by olfactory hallucinations of the stinkiest sort. It was fascinating reading, but I didn't finish it before the two-week library loan was up (I'm the reading equivalent of a channel surfer, and had five other books out).  Meanwhile, local author Keith Scribner’s latest novel was released.  I probably would have bought it anyway, but it helped that Keith had been holing up the last three years in an office 20 feet from mine while he wrote it.  I was curious to see the results.  The novel opens with a literally sensual drive through into Willamette valley, and the protagonist's wife, a "professional nose" (fragrance specialist) who’d gone asomniac catches fresh mint scenting the night air—her first clue that she may be regaining her grieved sense.

All of this was trivial synchronicity until June.

Of the five senses, smell has always been my home-run best.  I was born a super-smeller, one of those people who knows what you ate for breakfast if I visit you at dinner.  Ask my dear friend and walking partner Lisa.  Many of our late night strolls have been punctuated with my running aromatic narratives:  "Sewer's backing up!"  "I smell dryer sheets".  "Ah, jasmine blooming!"  There was definitely a down side.  Moldy oranges, Axe bodywash, cat piss-- I couldn’t help attending to it, blocks away.  But the upside? A summer day on Mary's Peak had me rhapsodic: chamomile and fir on the breeze.  And while I may lack fancy-ass oenophile terms, I could really enjoy a glass of wine; could taste everything from concrete to kiwi in a sip of stainless barreled Riesling.  I'm a bit of a synesthesiac, and smell and taste were a multi-layered sensory pleasure.  Fragrances had heft and texture, from velvet to burlap to silk.
sniffing the subway

All that disappeared in June.  I came down with a kick-your-ass virus, the first I've had in years.  I ran a fever, went through a couple of boxes of tissue, took to my bed, took sick leave from my private practice for the first time I can remember.  It was grass season in the valley, a time when I get pretty stuffy anyway, so it was a week or two of feeling better before I realized that even though I felt fine, something pretty radical was going on.

I could smell absolutely nothing.  Not rubbing alcohol, not the cat's litterbox,  not a campfire.  And taste very, very little.  Making pesto with fresh basil from my CSA box, I toasted $20/lb pine nuts and ground the basil with young garlic:  nothing.  Went to Country Fair in early July, and for the first time didn't notice the marijuana, the patchouli, the food booths, the 10,000 unwashed and very sweaty humans.  A bonus gift?  Walking past the Peacock outdoor smoking lounge to get to Magenta's-- no problem.  Of course, when I got there and ordered my pricey ginger martini, I might have been better off sticking to the water.  If it hadn't been for those floating fleshy bits and yuppie bar tab, I'd have been hard-pressed to notice the difference.

At first I thought it would clear in a week or two.  Two months later, I'm not so sure.  Sparky The Head Doc, (aka "Dr. Babe-to-you"), my neurologist sister, is pretty sure the goose-egg I grew after trying to relocate an old growth cedar branch with my forehead could also be involved in my troubles. It happened around the same time I was sick.  (Warning:  don’t garden in big hats if you are going to get lost in your fevery thoughts).

My son made a rich bread pudding tonight, which my usually taciturn sweetheart pronounced "incredible”.  For me, it was like eating school paste, and I gave it up after a bite. The fresh fruit salad with mint from the garden had guests exclaiming they’d smelled it from the driveway, but I couldn't identify a single component by taste.  Not even the raspberries I’d picked fresh and melting with juice only hours earlier.
Beginnings of the Bad Gooseberry Pie


I have taken to declining offers to dine out.  Why pay for food that gives no pleasure? And anosmia has certainly not improved my cooking.  I made a fresh gooseberry pie several weeks ago, so sour and salty it was barely edible-- but I couldn't taste it to know.  I still reflexively eat.  Sometimes I don't finish it, disappointed.  Sometimes I overeat, trying to find something that pleases--chasing an elusive gustatory high.

 I went to my doctor, pretty much figuring what I already knew, that there was nothing to be done.  But I wanted to do something.  She ran a few tests, then acknowledged either it would come back, or it wouldn't.  Meanwhile I am trying to get into textures instead of tastes with food, and the occasional sensation. But frankly I am pretty down about the whole thing.  It's as if a third of my world has vanished.  I suppose in the scheme of things it's a small tragedy, but it's a whole lot bigger than I would have imagined.

Earlier this evening I thought I caught a whiff of that bread pudding baking.  A slight hint of the butter, or cinnamon.  It made me hopeful.  I was really, really sad when I tasted it later-- or rather, didn't.

If my sense of smell doesn't return, I suppose I will learn to compensate.  I'll remember to check the burner instead of waiting for my son to run up from the basement to tell me the house is filling with gas.  I'll get more into colors and textures with food.  I'll give up cooking, or at least try to follow recipes rather than making it up as I go along.  Maybe now that I can't be a foodie, I'll lose a few pounds.

But I hope those memories-- the ones profoundly linked to scent-- will remain.  I worry about that.

Further reading:
Remembering Smell:  A Memoir of Losing--and Discovering--the Primal Sense, by Bonnie Blodgett
The Nose That Never Knows:  The Miseries of Losing the Sense of Smell, Elizabeth Zierah, Slate.Com
Smell and Memory, by the awesome Jonah Lehrer
Failing the Sniff Test:  The Nose, Ruined.  Paul Lucas, New York Times 2005. 
Yahoo Anosmia Support Group:  help and information from fellow sniff failers.
The Oregon Experiment, a novel by Keith Scribner

23 comments:

Maestro eXpressivo said...

It's ungodly, Jana. Your blog on the subject of anosmia is great, very informative, and well-balanced. Your personal journey with anosmia is just frightful, and I hope an effective solution is found soon for your particular situation. :( I know you have your head up; we're with you all the way!

~ Steven, in Tucson

winnie roberts said...

I read your description as though you were telling my experience last Jan. 5, getting a virus. I passed out 10 days later crashing my head on the tile bathroom floor. So as you, was it virus or severe head trauma that caused it? Had MRI's of brain and Drs. said it was probably virus related and could never or minimally recover. In May I found some articles on the internet written by Dr. Doty who I found out after researching him, has a Smell & Taste clinic at the Univ. of PA hospital in Phila. I qualified for the testing program and was diagnosed as severe/total loss of both smell and taste in olfactory system and in receptors in tongue. Go there if you can!

I also eat by rote, but I keep eating all kinds of strong things.....York Peppermint patties, etc. to see if I can get anything....so far, nothing at all. In the beginning I was so very depressed and almost did not want to live, but I am a social being and like being with people, therefore, I get tired of seclusion and started going back to my normal activities etc. I have found that I am better if more active and busy. I think I have almost accepted this for the rest of my life.....but like you, get frustrated when I try to and cannot enjoy a favorite food. Have a lot of "funny" stories associated with my personal experience....guess sometimes we better laugh even though we feel like crying. I found that the hardest part is that people in general do not understand, so sympathy is zero!

Jana Svoboda, LCSW said...

Thanks, Steve and Winnie, for posting.
Winnie, I get how completely depressing this is-- and I don't know that others can. It truly feels like part of the world is missing, a big and important part, and everything is grayed-out. I am hoping if this is permanent that I will compensate for that with more attention to visual worlds, etc and get to a peaceful acceptance. Right now, not so much. I thought about ST clinic (very famous among us!) but figured they would confirm what I already know, so maybe I'll spend the money on a visit to Iceland or something... Thanks for telling me your story. Would love to hear more.

john in LA said...

jana-

very nice post about an unfortunate disability...and, yes! there is actually a group that is trying to get anosmia to be recognized as a legitimate disability. i lost my sense of smell about 10 years ago after suffering from years of sinusitis. i also developed nasal polyps which have been removed twice. as you mentioned there is basically 3 ways to end-up not being able to smell; you are born that way, you're a 'head-banger' (suffered a head injury), or you have had some type of infection up in the nose.

i am currently a few months past my second sinus polyp surgery and am hoping to get a little smell back. for those who suffer from loss of smell due to sinusitis don't give-up. their is relatively new therapy that shows promise; doing a saline nasal rinse that includes a steroid solution. a lot of people lose their sense of smell due to the inflammation in the sinus cavities. the good news on this is that the steroid solution reduces the inflammation and is not absorbed into the body anywhere near as much as in pill form. i seem to be breathing much better and i sometimes get a 'whiff' of things like coffee or soap. i'm hoping and praying that my smell comes back.

a few of you have mentioned depression. be VERY careful in this area. the loss of sense of smell has a high rate of clinical depression. i am currently in my first ever deep severe depression. there are several other factors involved (life events) but i truly believe i have been in a mild depression the past several years in part due to my loss of smell. i just didn't realize it. but, looking back i now know that my melancholic attitude coincided around the time of my anosmia. not trying to scare anyone, but there are about 5 reasons i am in a very deep depression and i would say that one of them includes not being able to smell. "it takes one to know one' was mentioned above. same with depression. i never knew anything about until i got it. it's human nature to take your health for granted until something happens. i suggest talk therapy if you are really frustrated about not being able to smell. why? because it can become a mental health issue for some. not being able to 'smell the roses' in life is heartbreaking. one of the most frustrating aspects of this condition is that friends/family who do smell have absolutely no clue. 'wow, that must be great you can't smell bad things!' or my favorite, 'cool, what a great way to lose weight!' which i have over the years, by the way. i used to LOVE to eat. ironically it is similar to clinical depression in that regard; it will get you no public sympathy. same cruel ignorant type of quotes; 'snap out of it' or 'pull yourself up by your boot straps' and the like. so, when i meet others who can not smell i always tell them to be careful that it does turn into something that is truly even a worse nightmare; clinical depression.

finally, it may be a condition some of us might have to just live with. what to do? well, for starters embrace your other senses; texture, color, temperature, etc. are just a few that come to mind. and this is not just in regards to food. i know that before i got severely depressed my hearing and sight 'improved' emotionally in many ways. there was real enjoyment in that. i'm hoping to get back there if/when this depression ever ends. i taught art, film and music history. these subjects i loved before i went into my depressive state. each had nothing to do really with smell. coincidence? sexual arousal is also hugely connected to smell...i won't go there, but use your imagination as well as other senses to keep the flame burning in tis area! ;)

ok my post is long enough! thanks again for your blog on this topic. i could write more. but i won't. i'm truly sorry you cannot smell because i unfortunately 'get it.' stay hopeful though. people do recover their sense of smell. not often, but it does happen.

john

Jana Svoboda, LCSW said...

Hi John:

Thanks for sharing your story and thoughts. You're right on about the complexity of the losses when smell disappears. And about the danger of depression as a secondary and devastating add-on that is also misunderstood by those who've never experienced it.

People do recover from clinical depression-- with much better rates than from anosmia. Here's a couple of links from earlier blogs about depression if you're interested.

http://www.janasvoboda.org/search/label/depression

Sorry, I don't know how to make that a hyperlink in the comments section, so you'll have to copy and paste.

I wish you well in your journey out of the Black Dog's maw.

john in LA said...

dear jana-

i didn't even realize you were a therapist! i just received you note from the yahoo support anosmia group and came to your blog...

thank-you so much for your kind and hopeful words about recovering from depression. like i said, it's been 16 months now that i have been deep down in the rabbit's hole. the sense of hopelessness and not getting well is scaring me. i have the 'black dog' pretty bad. (i even did a round of ect.) people tell me that people recover from depression. i don't know. i have been basically lying in bed for over a year now. argh!

i briefly looked thru your archives. of course i went to the depression articles. you had a tolstoy quote in one of them. i LOVE tolstoy. i was in the middle of anna karenina when i had my 'break-down.' haven't been able to read it since. real bummer. one of my favorites quotes of his is;

'time and patience are the greatest warriors.'

i try to apply this to my battle with depression when i really get down.

wish you were in los angeles. it would be helpful i believe to have you as a therapist! you'd at the very least have empathy for my anosmia. ;)

i am bookmarking your blog. don't be surprised if you get some comments from me on some of your older blogs. i don't do much these days except surf the net for info on depression...i know; stop isolating and get out of the house. still, i look forward to reading your words and hoping to find some inspiration.

thanks again jana.

take care.

Anonymous said...

I know the above comments were written awhile ago, but they give me hope that one day my sense of smell and taste will one day return. I developed severe inflammation and nasal polyps out of nowhere and need surgery to hopefully "roto root" my sinuses. I had the surgery once last June, but the surgeon had to stop because I was bleeding to much. Hopefully, next time it will all go better!

Jana Svoboda, LCSW said...

Good luck to you, anon. There's more research on olfaction now than ever before and I've heard some good success stories in the last few months. Check out the anosmia Facebook or yahoo groups for info.

Anonymous said...

Thank you so much for your very expressive way of telling my story. I've had anosmia for about 7 years - no reason has been found...so as the doctors have said to do I'm 'dealing with it'. But not really - I have no one in my area that I can talk to, everyone that knows can't relate (not even my doctor) so they can't even be sympathetic to my woes. If I have one more person say to me 'oh my gosh if I couldn't taste I'd be so skinny'. We all know how that's going to turn out for them. I've been through all the stages of 'losing a loved one' - now I'm just trying to stay healthy and that in itself is hard to do. Going to the grocery store is painful. If I find something that I like I tend to eat it over and over again - that's my little bit of pleasure until I get tired of the same ole, same ole. It gets so depressing at times - but mostly I'm just sad that my friend won't be coming back. Thank you for your blog - I look forward to reading more. Patty, in SC

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anosmiaphobia said...

Dear Jana, thanks so much for writing about your experience. Your remark that most Americans would rather lose their sense of smell than the other senses prompted me to consider the question for myself. After thorough reflection, I believe that losing eyesight, hearing, speech or the ability to walk are problems, which can be tackled with some problem-solving (like braille, audiobook and a guide dog for the blind). Big problems, serious problems, but not hopeless. In fact, I know blind and wheelchaired people who do live quite gratifying lives.

On the contrary, I cannot imagine any problem-solving strategy that would tackle anosmia. Where the others appear like a loss of a capability, I imagine anosmia must be like losing part of oneself - part of one's identity. Very scary for me to imagine.

I am kind of glad I have not heard about anosmia until recently, and have able to live for fifty long years without fear of anosmia. And although we speak about a lot of nice as well as horrible things in our family, I might not even tell my children (age 6 and 8) that such a horrible illness exists.

From now on, I will do everything I can to protect my olfaction: wear a bicycle helmet, wash/disinfect hands regularly especially during flu season. I may even try to do smell-training from time to time to see if it can protect against the age-related form of anosmia.

Talking about age-related anosmia, I think it is a scandal that virtually no medical research is done how to prevent or alleviate this condition. Instead we worry about retirement pensions, but what good is all the money in the world, if anosmia takes away your ability to buy happiness?

Now more than ever, I will be enjoying my sense of smell and flavour while it's there. I know it's unfair, but it won't help any anosmiac if I plug my nose - like it would not help any deaf person if I stopped going to concerts. I really wish I had something more cheerful to say.

David McNamee said...

Jana, I ran across your blog today and was touched by your experience. I lost my sense of smell after a brain surgery in February 2008 to remove a cranial pharyngioma, a fluid filled cyst about the size of a walnut, tucked under the hemispheres and centered in the empty space between. I figure a nerve was cut somewhere. Sometimes I can get the faintest sense of a scent, but not always. I have gotten used to eating food and enjoying it, but in sure do miss the intense flavors and aromas.
Ours is a family of "smellers", and I miss I picking up the cat and smelling its fur, and I greatly miss the floral scents of wisteria, gardenia, magnolia and many more. I miss the smell of fireworks on the Fourth of July, and the scent of a rainstorm. These exist only in memory, and fortunately I can recall them but it is not the same as the experience.
All of my friends and family now know that I cannot smell, but now and then one will come up to me with something and say, in effect, "surely you can smell this!". I dutifully try, and then inform them that there is nothing, or just perhaps the slightest hint. They always apologize that they forgot, but I have gotten used to it over the years.
I guess it is a good thing to not be able to smell the bad/gross/stinky/putrid things, but I cannot smell a gas leak either, and perhaps other things (like myself!) that would be needful. One does not know how valuable a sense is until it is gone. I pray that I will be blessed with its return someday.
Thank you for your blog.

Jana said...

Dear david and anosmiaphobia; my apologies for not seeing and responding to your comments earlier. I do appreciate you taking the time to tell me your stories and thoughts. Now three and a half years in, some things are easier, and some still very hard. I walk the borderland between realizing this is not, say, Syria, while still trying to be self compassionate about the very real losses you mention. I can now smell a few things, and have relearned to eat, if not really enjoy, most foods. There is still so mUch I miss and grieve. Yes, it is a shame there is not more research being done, if you would like to support some that is, I recommend visiting the Monell (foundation? Center?) in Kansas City's webpage, and throwing them a few bucks if you can. They are working on it. Thank you for writing. --jana

Unknown said...

Hi

I just read this.


Thanks for interesting article


I have been severely anosmiac for as long as I remember, gradually learning over the years the difference between myself and " normal people,


Body odor is something I learned about from reading a book (temple grandin say when you fail to bathe and use deodorant, people say you stink)


But fact is that I love food and eating. I like berries, cherries, grapes, baked potato, baked sweet potatoes, etc, Mexican food, etc


I make potatoes in microwave oven and top with three or four different types of hotsauce; delicious


I avoid dairy products, soda, white flour, white rice, koolaid, and go days, weeks, or months without meat


I am flexitarian, but today being thanksgiving, and my being blessed with an invite, I did have turkey(dark meat), greens, potato salad, stuffing, corn bread, salad, sweet potatoes, and enjoyed it very much.


Interesting note on social skills: upper income people are often shocked by my condition and/or sympathetic


Low income people/workers and those who often deal with stinkers, are not sympathetic/pity, and often envy me a bit


The real suffering, oppression, pain, of/in my life has been caused by the false accusations, unjust punishment, beat into false confessions, helplessness, dependency, poor quality fake education, child abuse, cult(s) , happen both when I child and adult. The fact that the economy/society of USA, European union, Mexico, Libya, Gaza, Iraq, Pakistan, Afghanistan, much of Africa and Asia, (2013 to 2015) does not value/reward honest hardworking people. There is no upward mobility, . Life more unfair, illogical, and many like me live in fear and powerlessness, seeing no way out.


My learning disabilities, that make me unable to read maps, drive, do puzzles, are a big unfair cause of unfairness, bullying, exploitation, but my life/achievement/work would still be much better in a good economy (mass transit is wonderful, but I have to guard myself from the predators who have exploited/victimized me before, which would be easier if I had more money, security, and opportunities, as in upward mobility)

jb said...

Dear Jana,

I realise it has been a while since you published this piece but I really hope you get this. I have been anosmic since I was a child, I'm not really sure when it started but the docs reckon it was a virus of some kind. Only in recent years have I truly realised what a loss it is and I was very sorry to hear that you also suffered this loss.

I've just been accepted to a Masters programme to become a social worker. I was so excited about it as I am passionate about working with people, social justice and advocacy. However, I'm now worried that my anosmia will adversely affect my practice. I was studying non-verbal communication and smell was mentioned as a huge component, one which I will never be able to pick up on. I also worry about the practical aspects of not being able to smell alcohol on a client's breath or personal hygiene issues, for example. So my question is, have you found your anosmia has impeded your work as a social worker at all? My masters is due to start in September and I'm going to contact the regulatory body for Social Workers here in Ireland before I start, to ask them if I would even be allowed practice with this disability, but I would love to hear about your experience. It's something very few people can relate to so from a fellow anosmic and wannabe social worker, any insight or advice you could share would be very much appreciated.

All the best,

Jennie

Jana Svoboda, LCSW said...

Lucy,
I'm sorry that I missed seeing your comment until now. I agree that I like food-- wish I could savor it in the way I used to. I notice now I am pretty heavily reliant on basic tastes of bitter, sour, spicy, salty and sweet and tend to eat a lot of junk food now that didn't interest me before. Yes to hot sauce! I even put cayenne on ice cream.
The learning disabilities are another maze to negotiate, but I agree that economic inequality is a huge barrier for health and safety. Thank you for writing.
Jana

Jana Svoboda, LCSW said...

Jennie:
I'm delighted to welcome another anosmic social worker! Yes, it has been harder for me as an acquired anosmic to see my clients as clearly as I did before. But I am learning new skills for client assessment that don't rely as much on smell. It hasn't seemed to affect my practice as much as I thought, although I am sure I sometimes miss some things, such as alcohol or marijuana or body odor. But usually there are other clues that a person is mismanaging things that way. And my guess, considering how much I have adapted in these five years, is that you will do fine-- you've been adapting almost all of your life. There are social workers with no/low vision and hearing. You will use your other senses to interpret and assess. Best of luck to you in your career. DON'T BE AFRAID! And keep me posted.
Jana

jb said...

Dear Jana,

Thank you so much for your speedy reply! It was very reassuring to hear. As someone who's been dealing with anosmia for a long time, I do lament it sometimes but more often than not I don't even think about it. Everyone interprets the world differently and anosmics just have to pay extra attention to what our other senses are telling us and soak up the world as best we can. It would have broken my heart a bit if I couldn't continue my social work training so I am SO glad to hear that you found it hasn't affected your practice as much as you originally thought it might. For a profession that is all about identifying a client's strengths and using them, I hope they can see the value in all the other skills and attributes that I can bring to the job.

Thank you so much again for your reply. I'll keep you posted!

J

Unknown said...
This comment has been removed by the author.
Unknown said...

Jana ,
Thank you for your thoughtful & detailed writing as my experience mirrors yours minus the head trauma. I have experienced anosmia for 6 wks now. I too am a 'super smeller'. SO love aromas & fragrances of all types, & am terribly missing the smells & tastes of my world. I don't want sympathy, but will use your blog in hopes that others may give serious thought to what this is really like.. so many I know have said they wish it would happen to them so they would be inclined to eat less. I say do not EVER wish for this. I am working against depression over the loss of this dimension of life by counting my many blessings. But for anyone with a friend or family member who is living with this loss, please consider the significance & find ways be encouraging & supportive. And please never take this gift for granted.

Jana Svoboda, LCSW said...

Jo, saw both your comments and agree wholeheartedly with them. It's a strange and difficult journey. I lost my sense of smell in June too (5 years ago) and it really ruined my summer. I feel strongly you will improve, especially since you are having the altered distortions so early. I think that's a great sign your brain is rewiring. Smell train daily, even if it is frustrating. And please do share with your friends and family-- it made a huge difference when I educated them about it, because nobody really gets it at first. I'd never even HEARD of anosmia when I lost my SOS.
Wrote a new update and put it on the blog today. Not too cheery but really I am doing so much better than I was five years ago.
The group on yahoo and facebook were sanity savers. Let me know if you can't find them.
Best of luck, and thanks for writing.
Jana

MB said...

Thank you for your article, there isn’t a whole lot out there. Unfortunately Anosmia is not considered serious by most people (if it hasn’t happened to them). One of the most devastating parts has been the totally unsympathetic response of everyone in my life- even my good friend who has always shared a love of scents, perfumes etc with me. Of all people, I was sure he would understand! It's a good reminder
that when somebody tells you that they are really suffering with something, you should believe them instead of thinking you somehow know better, you’ve had worse etc.
I’m coming here after coronavirus. I lost my sense of smell and taste completely on about day 3 of being under the weather. Luckily this was by far the worst thing to come from coronavirus for me. I am very very lucky- I live in London and personally know 3 people who have died from the virus. I’m also 32 years old- most of the horribly life threatening cases in people I know have been over 60, but everyone needs to realise that this virus can leave ANYONE REGARDLESS OF AGE OR FITNESS with damaged organs. My coworker ( in his 30s) recovered from the virus three months ago, and says he still can’t go up stairs etc without being totally out of breath. Not being able to properly exercise is very distressing to him and doctors are unable to tell him when/if his lung tissue will repair itself. I write all this as a P.S.A to all of you who are lucky to live in a place that hasn’t had a serious Covid outbreak yet, it can be serious for a long time after you recover. Not trying to be patronising, I just noticed that when I chat on the phone with my family that lives in a rural area in the US that has barely had any cases, they make comments about it being "just like the flu" or less serious than the media etc make it out to be, and in my experience living through this in a hotspot, it's more serious than I personally thought it would be.
It has been about 3 months since I recovered from the virus, and about a month ago I smelled lilacs on a walk-the first smell since the loss. For weeks I didn't smell anything else, but it made me so hopeful. I am still hopeful, but as my smell returns, it has completely changed. Most things smell so awful- a mix of organic decay and chemicals. Dove soap smells so nasty- like burning smoking mud and manure mixed with acrid chemicals. I still can't smell most things, but what I can smell is somehow all wrong. When smelling lemon oil, I can't really smell the citrus, but smell a very strong butter/fat smell with a slight hint of lemon. All of my perfumes smell like garbage. Eucalyptus smells like cat pee only. Most of the time I can't smell my skin, but sometimes I get whiffs of sweet yeast from it.
Has anyone else experienced a dramatic change in what smell has returned? It feels impossible to describe the smells, because most of them I had never smelled before this. So weird. In some cases it seems like I am only able to smell a part of the bouquet, and other times it seems like my brain just has to be wrong. Hopefully scent training will help.
I wish the best to all of you suffering with loss and/or change of smell, it really changes the everyday life experience so much, and in unexpected ways. Thanks for all your comments as well-known I don't know about the rest of you, but I am trawling through the internet looking for comments like all of yours because the medical advice is just so vague and unhelpful honestly. Hearing about others experiences has helped me with the loneliness this causes.

Anonymous said...

Hey MB— thanks for writing. Hope you’ve experienced some relief in the years since you wrote this— I haven’t been on for a long time and just saw it today. Reach out if you need to talk. I know you have lots more company now. It’s a hard damn road, and people don’t get it til they get it, so they? I have lots of resources if you need them. Jana