One day, when revising some theory questions with my driving instructor, she asked me a very simple question.
‘What do you do if you smell burning from inside your car?’
I had to stop and think. Unfortunately for me, I would have no way of telling if my car was burning or – just as terrifyingly – if gas was leaking into my house, because I was born with congenital anosmia.
For 20 years I have not been able to smell but until the age of 16, my diagnosis had proven no real challenge to me – that is, until I started to take driving lessons.
I had always found that my condition was something quite interesting, but growing up many people didn’t believe me when I said that I didn’t know what something smelled like. They thought I was lying or just seeking attention.
As the condition is so rare, I can see why friends and family thought that I was making this up. But it’s true: I was born without an olfactory bulb. This is the nerve cell that transports aromas through to your brain.
Studies conducted indicate that 1 in 10,000 people are born with congenital anosmia, proving itself to be a rather uncommon hidden disability. The organisation Fifth Sense have established that many people born with congenital anosmia only realise they have the condition when they start school and are no longer reliant on their families all the time.
For me this was definitely the case – in fact, it was only when I got to high school that I realised.
As hard as it is to believe, I can’t remember the moment when I clocked this discrepancy, but when I mentioned my concerns to my parents, they were as eager as I was to uncover what the problem was.
None of us could work out why I couldn’t smell anything.
At the age of 14, I got checked at Alder Hey Children’s hospital in Liverpool. I was told that I was in fact ‘anosmic’ and that I have never smelt or will be able to smell anything throughout the rest of my life.
You may think that this diagnosis would change someone’s life, having been told that you will only have four senses and that you are technically disabled. But as I was born like this and smelling is something I had never experienced, the news didn’t really affect me at the time.
It was only in later years that I came to realise that the loss can be extremely inconvenient and there are a lot of psychological effects.
This was particularly difficult in high school. I was always second guessing myself, trying to work out if I stank, and it led to me being rather self-conscious during those years.
I am still always thinking about how I smell, whether that be a bit of body odour or maybe too much aftershave.
Even when it comes to buying aftershave, I have no clue what that scent is like, so I have to go off of my mum’s judgement most of the time. I’m also known for wearing far too much of it, but because I don’t know how strong it is, I just put loads on just in case I have BO – which I hope I don’t.
I won’t know what I smell like until someone tells me or if I ask them. In a group setting, if someone were to say, ‘There’s a funny odour in here,’ I immediately worry it’s me and become self-conscious.
It’s little things like these that make you realise it’s pretty rubbish to have this condition.
When coronavirus began and people started to lose their sense of smell, my family and friends really started to understand my experience more. It was different to my condition as, in most cases, the sense returned and it only lasted for a short period of time.
But Covid gave millions of people around the world insight into what life is like without all five working senses and how hard it sometimes is.
Now aged 20, it’s a bit of a running joke with my mates that I just can’t sniff anything, but it doesn’t affect me at all. Most of the time people are more curious about the condition, instead of wanting to make fun of it.
My family and friends forget all the time. I’ll always be told to ‘give this a whiff’ only for them to remember after asking that I can’t.
As the disability is so invisible, I think it’s easy for people to just forget but for someone who is anosmic this world is closed off.
I used to pretend that I could smell and just agree with people, nodding in agreement that their lunch did smell nice. I could not be bothered having to explain to every new person that I met that I couldn’t smell.
I was never embarrassed about the condition but it just got to a point where I was sick of having to explain it.
But now, as a journalism student and since becoming a presenter for youth media channel Offcut, I have been given the opportunity to speak openly about it and discuss invisible disabilities with a wider audience, as well as other topics that are less spoken about in the mainstream media.
I am more eager to say that I can’t smell and start a conversation with someone, as each conversation spreads a little more awareness of congenital anosmia.
It’s all about that awareness. I hope that people realise that invisible disabilities can come in all shapes and forms and by having a platform to talk about them it makes them more well known, especially congenital anosmia as it is never spoken about in the media.
And if I ever ask you whether I stink, please be honest! I genuinely won’t be offended – it helps me out a lot.
Jonathan Kenwright is a broadcast journalism student at the University of Salford and a presenter for Offcut, a youth media channel sponsored by true student. For more information, visit https://offcut.media
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