I can’t smell, not because of cold or COVID but because of a rare disease

By Rakesh Kamal

The fragrance of flowers, the smell of mud when it rains and the aroma of the food while cooking are feelings and sensations described by poets that I don’t understand. I appreciate flowers for the vibrant colours, rains for the fresh breeze and food for the taste and texture. I don’t understand these feelings because I can’t smell but not because of cold or COVID, I can’t smell by birth because I have a rare disease called Congenital Anosmia (CA).

According to The Genetic and Rare Diseases Information Center (GARD), Congenital anosmia is a condition in which people are born with a lifelong inability to smell. It may occur as an isolated abnormality or be associated with a specific genetic disorder.

As a kid, I thought I would learn to smell, just like how anyone learns to speak or read. I don’t know from when but I acted as if I could smell. In school, I covered my nose along with all my classmates and blamed someone if I heard a fart. It was my little secret that I can’t smell. No one could tell & no one will believe. As a Congenital Anosmic, smell for me is alien. It’s like asking you to listen to the dog whistle which I think most humans can’t hear, to see the ultraviolet part of the spectrum, which is invisible to the human eye.

Around the world, 1 in 10000 people suffer from Congenital Anosmia. As far as I know, there are no stats in India. In fact, I only know one other person who has CA in India! I am sure in a country with a billion people there are more!

I don’t know why I have this rare disease. I think it is genetic as I have this gut feeling that my grandfather also suffered from Anosmia. He struggled with smells but he never spoke about it. I also think the reason he went to the other extreme of selling incense sticks and talcum powder to prove he was not. For obvious reasons, the businesses involving him to smell failed miserably. I also have stitches on my forehead from when I was a toddler and don’t know if I lost smell then. There is no way I will never know if I lost smell or I could never smell but what I know is that I never knew how to smell.

There have been many times when people have laughed at me or written me off when I told them that I can’t smell. Many including a doctor once have said that I shouldn’t worry about Anosmia and ignore it as it doesn’t affect my life. Some in fact joke that it is a blessing because I can pass by sewage canals in the city and not feel a thing. It is not a blessing, not a curse. It is a curse when you know how it is to smell and then lose it. I can’t say I understand all those losing smells from COVID but I can empathize, welcome to my smell-less Anosmic world, it might stink but not as bad as you think.

My mother wouldn’t have put me in charge of turning off the stove if only she knew I had Anosmia. So many times I burnt milk or accidentally left the gas stove on that now I have a gas detector. It scares me every time I hear the news about industrial gas leaks or domestic gas explosions. I wonder how many deaths were anosmic. I constantly check gas knobs, I am always near the stove when cooking checking if the burners are lit.

I ignore the salesmen when walking through the shopping mall’s perfume section even if it looks rude, I can’t explain everyone my problem and I try to avoid them rather than lie. Same is with the flowers, I like roses over lilies because I like red over white. Do they smell the same or different? I have no clue.

An estimated 600 million — almost 1 in 10 people in the world — fall ill after eating contaminated food and 420,000 die every year. It is scary for an anosmic to everyday risk not knowing if the food has gone bad. Anosmics are more prone to food-based illnesses and there is no instrument to tell the smell.

Also, as an Anosmic I have been scared of having to choose a career that involved smell. Jobs like being a chef, working as a fireman, perfume company, in a chemical company were out of the question. Sniffing wine during Wine tasting feels so fake, I would rather gulp and enjoy than act like I understand the aroma.

According to GARD, the exact underlying cause of this condition is unknown. Scientists suspect that the condition is due to abnormal development of the olfactory system (the sensory system used for the sense of smell) prior to birth. This may include abnormalities of the nasal cavity; disruptions in the pathway that carries information from the nose to the brain; or malformations of the portion of the brain that processes the sense of smell.

If a doctor examines a month old baby for hearing and eyesight, why are kids not examined for smell? Maybe it can be fixed if detected early. But how will a doctor check if there are not any instruments available?

I only started talking about Anosmia at 21, after I met my partner Padma Priya. All those years, I lied to my parents, friends, doctors but more importantly, I lied to myself. I lied because no one would believe me and I no one ever told me that it was ok. Even now after being together for nearly 15 years I find it difficult to ask my partner to smell something for me, how many times do I ask and who will want to smell stinking food.

The reason why many people don’t talk about it I think is because we are not taught vocabulary. We are taught in primary school, what people who can’t see or hear are called. No one tells that there are people who can’t smell also. We take it for granted. You can do your bit by introducing the word ‘Anosmia’ to your kids. Tell them to be empathetic to people who can’t smell.

The word Anosmia is itself confused with Insomnia, Anemia or Ammonia! And what about vernacular languages, is there a word for Anosmia in Telugu? I will save you some time, I googled. It is called ఘ్రాణ జ్ఞాన లోపము (Ghrāṇa jñāna lōpamu). Now imagine how a 5-year-old kid will tell this.

This sensory disability doesn’t necessarily affect anyone else, unlike people who can’t see or hear. Policies are designed to include people who can’t see or listen, rightly so, and support with special hospitals, additional research and tax benefits are provided. You may ask if people with Anosmia are not talking about it and living life normally, why should others who don’t understand what not being able to smell talk about this?

We should all talk about Anosmia because there is not enough research being done. It is not considered a problem. Because now in many COVID patients, Anosmia is a symptom. If more research was done earlier we would have probably been able to handle it better. Along with the temperature checks and oximeters, maybe a smell-o-meter would have helped reduce the spread further.

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