What is it like to live without taste or smell?

Like many Instagrammers Olly loves to cook and posts beautiful pictures of everything from handcrafted sourdough to spicy fish tacos – but she never gets to smell or taste her creations.

She has anosmia, a condition that means she lost her sense of smell and most of her taste.

Now, seven years after developing the condition, Olly says that people don’t understand the emotional impact of suddenly losing two of your senses.

The 28-year-old, who lives in Inverness, explains: ‘You don’t understand how much you use taste and smell until you lose those senses. I think people really underestimate it.

‘You can’t enjoy food or smell those things that are so enjoyable. I’ll never smell freshly cut grass, clean sheets, bread cooking or the smell of my grandma’s perfume and that’s hard to deal with emotionally.’

Olly developed the condition after suffering a head injury on her way home from a night out at university. She believes her drink might have been spiked and she fell, later waking up in hospital.

Initially she was diagnosed with a severe concussion but as she recovered, she realised she couldn’t taste food properly.

It was 18 months after her injury before she received a diagnosis of anosmia, something she believes is down to a lack of understanding and research around the condition.

Support for anosmia sufferers is out there – a charity called Fifth Sense was set up in 2012 to help people affected by smell and taste disorders – but most people, and even medical professionals, don’t know about the condition.

Olly explains: ‘The concussion was gone but I still couldn’t taste or smell. I brought it up with my doctor and they were quite dismissive. They said that I hit the back of my head and it couldn’t have affected those senses because the part of the brain that deals with that is at the front.

‘I was given a nose spray but obviously it made no difference.’

After months of going back and forth to appointments, a specialist noticed scarring at the front of the brain during her second brain scan.

Olly says: ‘The doctor just said here’s a lot of scar tissue on that part of your brain and basically that was it – it’s not coming back.

‘It was a really hard thing to hear. It is such a big part of your life and it wasn’t the most sensitive way to say it.’

Olly struggled to eat anything beyond toast and cereal because she says it felt like a waste of time when she couldn’t taste or smell anything.

She says: ‘I’ve always loved food and I grew up cooking as well. I couldn’t be bothered to eat as I didn’t want to be able to spend time preparing food that I wouldn’t enjoy.

‘It wasn’t great because I wasn’t eating a nutritionally balanced diet.’

But the food blogs that she had enjoyed before her injury helped her to realise that food doesn’t just have to be about taste.

‘I have read food blogs for a long time,’ she says. ‘That’s how we got inspiration for cooking and there are a couple that I had read for a long time. After my injury,  I just kept reading them.

‘It got me back into food as I was looking at pictures and thinking it would be fun to try making those things.

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My first instagram-worthy loaf. Getting into sourdough is harder than it looks ??? . . . . . #sourdough #loaflife #baking #bread #carbs #absaremadeinthekitchen #anosmia #foodieswithanosmia

A post shared by Olly (@ollyspantry) on May 30, 2019 at 3:15am PDT

‘For me cooking is about feeding other people. I used to bake for my friends at uni and have brunches and things because I get enjoyment out of seeing other people eat my food.’

‘Now food has become more about the process and experience than how it actually tastes.

‘I enjoy going out to dinner. I didn’t used to but I enjoy it going to nice restaurant and it’s an experience more than the food itself.’

Olly now has about 10% of her taste and smell but it is unlikely to recover any further.

‘I can taste if things are salty, sweet, bitter or hot but nor much beyond that,’ she says.

‘At the start, I put hot sauce on everything and I put too much salt on everything because at least I could taste that.

‘Now I like cooking for my partner so I concentrate on other things for me. I can put parsley or coriander, any green herb on my food, and I don’t taste the difference but it’s important for it to be there because it makes it look nice to eat.’

It’s estimated that around 3% of Americans have anosmia, which is similar to the number of deaf people, but the condition is not very well understood or researched.

There are a number of different causes, according to Fifth Sense UK.

Around 15% of people develop anosmia because of a head trauma like Olly, but for 25% it’s due to nasal or sinus disease, 20% due to respiratory infections and for 25% of people the cause is not discovered. Around 1% of people with the condition are born with it.

Debs Davis, a hypnotherapist and life coach from Cheshire, was one of few people born without the sense of smell.

The 49-year-old explains: ‘It took me years to realise I had it – it’s not like not having one of the other senses like sight or hearing.

‘I was into my teens before I realised that other people could smell more than me.

‘Then, I was on the tram one day sat opposite a man with his young son who was fishing around on the floor with his hands. His dad told him to stop because it was dirty and, instinctively, the boy smelled his hands. I remember thinking that it would never have occured to me to smell my hands.

‘I think that was the moment that I fully realised the impact of not being able to smell.

‘Even then, I just accepted that that was the way it was. It was a conversation starter and a bit of a novelty.

‘It was in the days before the internet, so I didn’t think to research it and it wasn’t until many years later that I realised that is was a specific clinical issue and that there were tests to diagnose it.’

Having never been able to smell, Debs didn’t experience the same sense of loss as Olly but admits it does cause problems.

She says: ‘I try not to dwell on what could have been. From time to time, I think it would be nice to be able to smell my kids, the beach and those other things that evoke strong emotional feelings in me.

‘Most people’s smell is a key factor in them being able to recall personal memories, but without this I rely on photographs. My memory of day-to-day factual details like my ‘to-do’ list is still extremely sharp, but I find that my friends can generally recall more than I can from our shared past.

‘I guess that the biggest impacts are what I would call my ‘smell paranoia’ – off food, smelly clothes, smelly rooms in my office or home etc. My family and friends act as my ‘sniffers’!’

Safety is probably the most important way we use our sense of smell and like Debs, other anosmiacs say they have to rely on others to keep themselves safe.

Lucy Farrington Smith, 26, from Leamington Spa, developed anosmia in March 2018 after suffering from a virus.

She explains: ‘One morning I walked into the kitchen and said to my mum, “and now I can’t smell”.

‘I thought nothing of it initially – your taste and smell go with colds, but they always come back.

‘A few weeks in I realised something was wrong. I would blow my nose compulsively to try to clear the passages and smell the strongest things I could find in the kitchen, eventually leading to nosebleeds so bad my blood vessels needed cauterising.

‘I went to my GP and his first words were: “I don’t know what to say, I’ve not seen this before”.

‘He was Googling during the session. I left the consultation with tears in my eyes – I asked him if the senses would come back, and he said “I’m sorry, I don’t know”.’

What causes anosmia?

We smell through our olfactory system but it can be damaged or stop working properly. Some people are born without a working olfactory system.

We detect odours both through the front of our nose and through the back of our nose from our mouth.

This is how we appreciate flavour in food so when the sense of smell is damaged, it affects the sense of taste too.

Lucy admits that losing her sense of smell has taken away some of her own independence because of the loss of one of the body’s natural safety checks.

She says: ‘Early into my diagnosis, a friend left the gas on in the kitchen after cleaning. I was in there making coffee, the kettle whistling and muffling the noise of leaking gas.

‘My boyfriend came into the room and immediately smelt it, and turned off the hob. The smell had reached the living room and beyond – but I was none the wiser.

‘I’ve started taking gas alarms with me wherever I go and compulsively check smoke alarms. I check the hob and oven before I sleep.

‘I’m trying to trust others to be my ‘nose’, but it’s hard. I feel a complete disconnect from my friends and family at times when I dwell on the loss.

‘Most of all, I miss the independence I feel I’ve lost now I have to ask people if the milk has gone off; if my clothes smell; or if there’s gas in the kitchen.’

Data analyst Inês Silva, 24, from London, says that living without a sense of smell has affected her mental health.

She says she has no memory of ever having a sense of smell but wasn’t diagnosed until she was 15. Now, she constantly worries about how she smells when she’s out and about, causing a lot of anxiety.

‘It’s usually over the summer when it’s hot weather and I get self conscious of my own body odour, as I don’t know if I’m smelly or not.

‘It affects my mental health. If I’m on the tube and people look at me my first thought is “OMG, I stink and people know.”, “Am I smelling that much?”.

‘For “normal” people it can be hard to understand – most of my family and friends don’t – but for us that can’t smell it’s really hard and tiring sometimes.

‘But there’s good sides to it, I’ll never smell another person’s body odour and I’m glad for it. I just fear for my kids as I’ll never know if they pooped their diapers or not. Living with anosmia has its high and lows for sure.’

The condition doesn’t just impact enjoyment of food and drink. Anthea Bull, 46, lost her sense of smell in August 2012 as a side effect of surgery to remove a malignant tumour on her olfactory nerve.

She says it has affected many aspects of her life, particularly when she travels to new places.

She says: ‘Everywhere I go smells the same – travelling feels like being on a film set with shifting backdrops. Shanghai, NYC, Manchester…all smell the same.

‘Life seems more two-dimensional, somehow lacking depth – sometimes it can feel like living in a bubble as everyone, everything and everywhere smells the same.’

One of the things she finds most difficult is a lack of understanding from other people.

‘It’s an invisible handicap – nobody ever remembers, even close friends and family,’ she says.

‘It’s very difficult for other people to imagine what it’s like. You can simulate being blind or deaf but it’s very difficult to simulate the lack of smell as blocking your nostrils doesn’t stop smells from reaching your brain retronasally – via the back of your mouth.

‘The closest other people seem to get is when they have a really bad cold.

‘People telling me that if they had to lose one of their senses, they would choose smell…because they only think about conscious smells and usually tell me how great it must be not to smell the bad smells.

‘They don’t think about how important tastes are -“Flavours” such as cinnamon, lemongrass, garlic, lemon are no longer part of my world.

‘Imagine coffee without the aroma. Imagine frying bacon without the smell. Imagine not knowing that your friend has spent hours baking bread for you when you go and stay. Imagine not being able to tell what kind of cake you’re eating e.g. lemon/almond etc. Imagine eating strawberries that always taste like the wateriest strawberry you’ve ever eaten.  Imagine not being able to tell what kind of tea you’re drinking. Imagine not being able to tell the difference between a glass of tonic water and a G&T.

‘Anosmia is about so much more than not being able to smell and taste.’

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