with Chris Kelly, Founder, AbScent 

Below,  patients tell their stories of what happened when they went to the doctor to investigate their smell loss. These comments have been collected through two Facebook groups: Facebook/smelltraining and Facebook/LivingWellwithAnosmia. I am grateful to everyone who took the time to send me their comments.   – Chris Kelly

“is there something wrong?”

My own ENT knows very little about anosmia and she also doesn’t understand the devastating impact of the loss of smell. My eyes started to tear up when she told me that the loss may be permanent. She was surprised and said, “is something wrong?” and I answered “You’ve just told me that I may have lost my sense of smell forever, of course something’s wrong!” and she answered “Oh, I thought maybe something else.”   -KV

She has never said the word “anosmia” to me but it is written on my chart. Everything I have learned about it has been through research on my own. Mine shrugged, “well, that’s gone”. I said I think I’ve smelled a few things. He said real things, that were really there? Yes. “Maybe it will come back” another shrug. I’ve been to two other ENTs, both have said he’s the best in the area.  -JT

It might come back, but since you had a TBI, it could have been way worse.  -EK

Me wanting to know the cause and at least do the last scan to rule stuff out, and my ENT not planning on doing anything else and not concerned saying “We will never know”.  -MM

“Maybe you’ll lose some weight…”

My ENT did all the scans and told me everything looked good. So I asked what now? “Try some Zinc and magnesium!” Shrugging his shoulders said “well you might never get it back”. Gave me steroid sprays, which I didn’t use. I can’t do steroids! Went to my internist for 6 month checkup and he said my mother lost hers but she got it back. Age is a factor?? Really? I’m not your 90 year old mother! At the last visit this past month he didn’t even mention it..so I told him remember this loss of taste and smell issue? He looked at me and said well maybe you’ll lose some weight from it! I was near tears as he is leading me out the door!! How insensitive!  -DL

I said I’d banged my head and couldn’t smell or taste anything anymore. His reaction, “oh don’t worry about it once the swelling goes down it should come back. If it’s not back in four weeks make an appointment”. P.s. He didn’t even check the huge bump on my head. “What if it doesn’t come back?” “Well sometimes it’s permanent”. Thanks for that!  -DJ

“I never realised shrugs are a kind of medical diagnosis”  

I never realised shrugs are a kind of medical diagnosis   -JT

I think the worst part was having to wait 6 weeks for an appointment. I called and was understandably freaking out since it was pretty sudden. The gal taking the call told me that if it was an emergency I should call 911 or I could wait for the next open appointment in 6 weeks.      -JV

Hay fever: this was still being said by December 8 months after having sinus problems with a heavy cold. I had more explanation and help in India on vacation. Had a scan and was advised to have a back tooth out. No help whatsoever really. Never even mentioned the word anosmia. I had all my information from the internet to begin with. Seems like it is an unspoken condition they want swept under the carpet. So glad I am 90% recovered.   -CM

“If you have to lose a sense, it’s the best one to lose” 

I told my consultant I hadn’t been able to smell for years. She still went through the farce of getting me to do a smell test – in case I was wrong/lying. Then concluded it was probably due to a blow to the head and it wasn’t really worth investigating further as it wasn’t going to come back, “but if you have to lose a sense, that’s the best one to lose.” I mentioned a specialist whom I’d heard had trained in America – could I seem him? “No – absolutely no point.” I settled on an MRI scan offered at the last minute. “If you don’t hear from us, it means we found nothing”. I never heard from them. That was that.   -SF

My ENT asked if there was anything unusual that happened when I lost my sense of smell. I said I sneezed continuously for about five minutes non-stop which is not normal for me and then did not sneeze again for a whole month. I told him I usually sneeze daily because of allergies so it was weird I did not sneeze for a whole month after having a sneezing fit. He sarcastically said well ” I haven’t sneezed in a month” shrugged his shoulder and looked at me like I crazy and ridiculous.   -JG

“It could get better, it could get worse, or it could stay the same. Time will tell.”  -SM

I was a kid, <10 years old, and my pediatrician says, “haha! You’ll get it back later. See you in 6 months!” I laugh about it now – oh doctor, how I wish you were right! But it does highlight a real problem in which kids aren’t taken seriously with regards to olfactory loss.   -NP

“It’s not that big an issue – not as if you’ve lost your sight is it?”  -DR

Recently I mentioned to a doctor: “I have anosmia”.  He said “what is that?”   When it first happened to me about 5 years ago I went to my GP for answers. When she said it won’t come back I said I need it back!! And she responded with “why? Oh I guess it is one of your senses”.I went to a Neurosurgeon (that I waited 6 weeks to see) for piece of mind and to investigate further. To which he opened up a big medical book and read up on it and told me “you know more about it than I do”

July 02, 2017