Covid Perspectives: Living with Sensory Loss

In our Covid Perspectives series, people share experiences and thoughts in their own words. These are the opinions of the individuals themselves, not of Covid Aid. By sharing these, we aim to reflect the need for visibility and to raise the voices of the millions around the UK who continue to be severely affected by the Covid-19 pandemic. Emma Carter, outdoors enthusiast, swimmer and yoga lover living in Calderdale, West Yorkshire shares her experience of sensory loss and Covid-19 with us. With her permission we are republishing it here.

Specifically cooking - actions and smells which would occupy me for hours. Whether just for myself, for family or friends. Slicing garlic so thinly it's transparent then adding it to gently warmed, golden oil in a frying pan, releasing the wonderful aroma and hearing it sizzle. This would bring me joy. Pouring in white wine and watching the bubbles fill the surface as the smell filled the kitchen. Pure delight. Hunger inducing. Grating cheese and popping small chunks of sweet, tangy cheddar into my mouth to savour. Sipping a glass of ruby red Primitivo. The smell of bacon grilling while buttering soft, white Scotch rolls. A chocolate cake in the oven reaching the point when your senses tell you it's almost ready. Freshly baked bread. Comforting, delicious.

All this changed at an exact point in my life. I can remember it like it was yesterday. Tuesday 6th October 2020, about 5.30pm. Two lovely friends had popped by with a care package to help me though the awfulness of testing positive for Covid. They'd brought all kinds of goodies, bringing a smile to my face and wholesome goodness into my body. Dried Polish kabanos, Highland Park whisky (purely medicinal), kombucha and fresh green veg, home-made chicken soup. Full of love and tastiness. 

The virus had knocked me sideways. The positive PCR a real shock a couple of days previously. And then two days later, boom, my world changed. 

I'd eaten a couple of bits, felt my appetite returning. Then suddenly I couldn't taste anything. Nothing at all. My sense of taste completely gone. I'd heard, like all of us, of this weird symptom and cursed it striking me. My sister had endured a similar experience at the beginning of 2020, before we had tests and vaccines, and we presumed she'd also had the virus. Her senses of taste and smell had disappeared for a week, to the day. I knew other people who'd been similarly affected and supposed I'd have the same experience. 

The home-made chicken soup felt wonderful and beneficial as I cosied up on my sofa and drank it down. Awful shame I couldn't actually taste it. I found myself counting the days, too much time on my hands, as I sat at home feeling ill and virusy. Aching limbs, fuzzy head. And two of my senses obliterated. It was surreal and upsetting. 

After a week, I Googled 'losing your sense of taste and smell' and found helpful websites, chat forums, Facebook pages. On discovering a group called AbScent who had lots of information about 'smell training', I joined their Facebook page and read lots of the comments, people's stories, helpful hints. And felt a despair and depression sweep over me. So much sadness from so many people across the globe going through a similar thing – and some were 9 months, a year, 18 months along the line. Would I ever be able to smell and taste again? 

After two weeks, I was 'allowed' out again and promptly went to buy oils from a local shop and ordered tiny screw top jars from the internet. Making up my batch of four 'smell jars' I felt like I was at least being proactive about my recovery. And each day, for weeks on end, I diligently inhaled citrus, geranium (rose oil was too expensive!), clove and eucalyptus. I got a tingle in my nostrils from the eucalyptus but that was about it. The others I couldn't distinguish. And this is how it was for months. To the extent that I got so disheartened I gave up.

I just wanted to stop thinking about it, this horrible loss I was experiencing with no obvious end to it.

People would say things like “Aren't you scared it won't ever come back?!”.

“I am now you insensitive idiot!” would be the response in my head but I didn't want to offend. 

Salt and chilli were my friends. They are detected on the taste buds as is sweetness and savoury umami. My poor heart went through a hammering as I piled salt onto everything, ate tonnes of crisps, and added chilli flakes and Tabasco sauce to my meals throughout the day. But how bored and frustrated I got having to explain to people the difference between tastes and flavours. On repeat – no one seemed to get it. 

Taste buds detect salt, bitterness, sweetness, sourness, umami. These have nothing to do with the infinite array of flavours in the world of food and drink. An array which had just disappeared from my world. It was heart breaking and soul destroying. My love of food and drink had been taken away in one fail swoop. Out of my control.

As for smell, perhaps the sense we take most for granted, I never shall underestimate it again.

Reintegrating into the big, bad world after being holed up alone at home, feeling every aspect of the virus riddle my being, was difficult. No one understood. Fatigue and depression were easy enough to explain and people, on the whole, could be sympathetic to these symptoms. But this sensory loss. That was, and still is, very different.

Returning to work after a three week recovery period, too short I found out with hindsight, I was greeted with lots of questions. The virus was still quite new, not many people had direct experience of it at that point. How unaware we were of the prolonged nature of it that was to come.

When I told those who asked about my symptoms, one comeback was “Yes but have you got any of the serious ones?” Like loss of breath or chest problems. 

“I've lost two of my senses! It feels pretty serious to me. Can you imagine all of a sudden not being able to see or hear?” Blank expressions, uncomfortable silences. No, people couldn't imagine.

I felt alone and distressed in equal measure. And then, intense pain around grief and loss reared its head. Knocking the wind out of my already battered sails and making me feel sick to the stomach. Loss I'd experienced 4 years previously, that I'd buried and locked away in order to be able to survive and turn my life around. All of a sudden, it was there tapping me on the shoulder. First, a whisper in my ear “Hey, remember me?” then it got louder and louder, more urgent. Needing to be dealt with. There were lots of tears, a physical reaction which I couldn't ignore. It affected my relationship with my boyfriend, my friends and family. It was impossible to explain and I knew I needed to act. So I sought counselling help. She was kind and intuitive. Let me talk and cry. Talking about loss and grief is hard work, gruelling. I endured it for 6 sessions then decided enough was enough.

This was something I had to learn to live with. And so I have.

Two years after Covid got me, I can smell and taste a lot more again. However, Mini Cheddars, Quavers, Wotsits, all the cheesy snacks still taste of nothing at all. Cake is just sweet, sugary sickliness. If there is chilli in anything that's all I can detect. As soon as some flavours started to return, about a year ago, I quickly found out peppers were hideous, bitter things that I needed to avoid. Gorgeous, sweet red peppers used to one of my favourite things to eat. Most vegetables are still pretty bland but I make myself eat them because I have to. Red meat is pointless unless I need an iron fix.

Chicken wings bring me joy they way they always have as does Thai food, both reminding me of happy times and places even though I can't taste them properly. Single Malt Whisky is, thankfully, more than just fire juice now and I can just about tell the difference between red wines again. Bizarre things like savoy cabbage and pumpkin bring me more joy than they ever did pre-Covid. They are sweet and have a lovely texture.

I still have to field thoughtless questions and comments and do more avoidance of certain situations than I used to.

My resilience has been invaluable to this point and I am grateful for the people I have in my life who know how much it can still hurt. To have had a great pleasure taken away in a brutal, sudden way then slowly replaced with a weirder, much less satisfactory version. It still catches me off guard. I get excited about eating something then one mouthful in, realise it tastes of very little. But a month ago I smelt a rose for the first time in almost two years. And the scent of my boyfriend's skin is back which I missed immeasurably. I still cannot smell most things in nature which makes me sad and disconnected. And cooking is only done when I feel up for it. 

Will it ever be the same again? I have no idea. I have changed and I have to roll with that. The biggest thing I have learnt is that I will never take my senses for granted again.

• Advice & Info: How charity Fifth Sense is offering Long Covid guidance, support, and hope for those with post-viral smell and taste loss

• Free Online Course: Introduction to Smell Loss & Distortion