I lost my sense of smell 18 years ago – people are finally taking it seriously

The cold crisp smell of a frosty morning. Chimney smoke on a cosy winter evening by the fire. The damp, perfumed scent of a hot house in a butterfly garden.

Those used to be some of my favourite scents.

Our sense of smell is directly linked to how we sort and store memories, and – like most people – I took mine for granted. Until one day, I lost it forever.

At the age of 25 in 2005, I suffered a head injury after falling down a flight of stairs.

I ended up in hospital for a week and was told I’d been very lucky to survive after landing on the back of my head.

On the day I was discharged, my dad cooked a risotto and I realised I couldn’t get a whiff of it. I just thought it was a bit strange – I didn’t even realise you could lose your sense of smell.

Even when I did, I didn’t panic; in hindsight, I don’t think I really realised what the impact would be.

At first it seemed trivial, compared to what the consequences of my injury could have been, but as the weeks passed, I asked my doctor what had happened. He said he’d heard of the side effect before, but didn’t know much about it and couldn’t really help.

I had to learn to live with it. I haven’t smelt a single thing for the past 18 years – not a lover’s perfume, a freshly mowed lawn or a burnt piece of toast.

I was shocked by how much being unable to smell affected my quality of life. In the months after the accident, I could feel my experience of life was different, but I was still recovering from other elements of the head injury as well.

Yet, as I recovered from those, I discovered I found it hard to form memories of new places or people because I wasn’t able to get a sense of their aroma. It had an impact on my mental health too, with a lower mood and sense of disconnection – it felt like I was viewing the world from behind a pane of glass.

Because I’d had very little support, it took years for me to even connect those feelings with my loss of smell.

Another thing people don’t realise is that it can be very unsafe. Imagine going through life without being able to detect smoke or leaking gas.

I experienced this firsthand in 2008 when I returned home alone to a flat I was sharing with a friend in Leeds after a night out.

I was in the kitchen getting a beer from the fridge and I was a smoker at the time, so I had a cigarette in my hand, ready to light up.

Luckily, I decided to take my beer and fag into my bedroom to relax. That decision probably saved my life.

Unbeknown to me, we’d left the stove on before going out and the kitchen had filled with gas. I couldn’t smell it, but if I’d flicked my cigarette lighter I’d have been a goner. When my flatmate returned a couple of hours later, he told me he could pick up the scent of the gas from down the corridor.

I felt like I was the only person on the planet having this experience.

It was a Eureka moment when I finally linked my loss of smell to the other feelings I’d been experiencing. In 2011 a good friend read an article in a newspaper about a girl in America called Molly Birnbaum, who’d lost her sense of smell, so I bought her book, Season to Taste. It literally changed my life.

I even discovered my condition had a name – anosmia – which can be a temporary or permanent loss of the ability to smell.

In my case, thanks to the head injury, my loss was permanent. Molly’s book gave me the confidence to start talking about it for the first time – I finally knew it was ‘a thing’ and it affected others. It wasn’t just me.

I even wrote to one of the professors named in the book, who in turn put me in touch with ENT consultant Professor Carl Philpott, who’d established the NHS’s first smell and taste clinic the year before.

That’s what led me to set up my charity, the Fifth Sense, in 2012, in partnership with Prof Philpott. I wanted to find others affected by anosmia and transform the way that this disorder was understood, treated and researched.

I may not be able to pick up the aroma of freshly-cut grass or my dad’s cooking, but at least I can work to help keep other people like me safe

People from all over the world began contacting me via our website for help. Some, like me, had permanent anosmia, while others hoped it was only temporary, brought on by a virus or flu. Others had presbyosmia, which is the gradual loss of the olfactory system as we age.

I wanted to make sure that, in future, other people wouldn’t experience the same lack of knowledge and support that I got.

In the past couple of years, the need for our services has exploded.

Covid-19 led to huge numbers of people suffering anosmia and parosmia – which is a distortion of the sense of smell – because a lot of people experienced losing their sense of smell for a short period of time as a result of the virus.

There’s a real gap in knowledge about it, so we’re about to start delivering educational sessions for NHS England’s Covid recovery services, helping them to better support their patients.

Post-Covid, people are finally listening.

Last year, Fifth Sense was the British Society of Perfumers Charity of the Year, which was a big deal because it’s an industry passionate about people’s sense of smell, recognising that many people aren’t able to make use of it.

Today, 27 February, is International Anosmia Awareness Day 2023 so we’re launching a major new safety campaign highlighting the impact this disorder can have on people’s health, wellbeing and safety.

We’re calling for better services, research and support to help those affected and their families. We want to make information on smell and taste disorders more readily available, and work with health and social care professionals across the UK to engage with people who might not know about our services.

One of the aims is to increase awareness of how dangerous losing this sense can be for personal safety, and to ensure anyone who needs one has access to a natural gas detector, which is a bit like a smoke detector. An alarm like this could have helped me in my kitchen back in 2008 when I had the gas leak.

Studies in Europe have found that around 1-5% of the population has some form of anosmia based on pre-covid European population studies of olfactory dysfunction, and of the 4.2m people over 65 living in the UK, it’s estimated that around a quarter of them will have some form of olfactory dysfunction, according to ONS data.

I’ve had to learn to be very careful; I don’t have a gas boiler and I never leave my cooking unattended. But it can cause a lot of worry and anxiety.

For me, I’ll always miss the scents that help connect me to places, like the outdoors. The city is always very different from the countryside.

I may not be able to pick up the aroma of freshly-cut grass or my dad’s cooking, but at least I can work to help keep other people like me safe.

For more information, visit the Fifth Sense website here or follow them on Instagram here.

As told to Jade Beecroft

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