Parosmia

“The smell was like a punch in the face. It was just horrible. Absolutely awful.”

This is Louise Samantha describing the smell of her colleague's lunch.

The 37-year-old has Parosmia, a condition that distorts taste and smell, after contracting Covid-19 last March.

She said: “I could not explain to my colleague what the distortions were like. Obviously, Parosmia is not really recognised and no one at work knew what I was talking about."

Samantha could not eat any meat, gravy or stuffing on Christmas Day. Many foods for people with Parosmia become foul-tasting.

The UK government officially added loss or change to taste and smell to symptoms of Covid-19 in mid-May. The loss is often instant, but the distortions to sense can begin as long as four months after infection

ONS figures suggest that between 5-10% of people who have symptomatic Covid-19 develop long-term taste and smell problems. In the UK, that currently sits at well over 250,000 people and this is set to rise.

The latest research suggests that Covid-19 virus can infect cells that support sensory neurones in the nose and mouth. Without support cells, the nerves become damaged and cause parosmia.

Julie Sharp had Covid-19 in March. The 55-year-old then began struggling with parosmia in May.

She said: “My ability to smell and taste fluctuated for eight weeks after my main symptoms had gone. And then the hell of parosmia hit.

“I have terrible distortions in flavours. On Boxing Day my husband cooked a lamb dish and as I walked into the dining room I thought: I'm not going to be able to eat that. I don't even think I can sit in the room while my family eat it.”

For those who had Covid-19 in March and April, there was confusion over symptoms. Many people lost their sense of taste and smell but did not know it was because of Covid-19 and this is reflected in the Google trends.

A spike in google searches for 'loss of taste and smell' in March shows people looking for answers. Trends now suggest people associate the senses with Covid.

Johnny Rogerson was in-between cheffing jobs in March when he bit into a sandwich and tasted nothing. He had no taste or smell for the next six months but no other Covid-19 symptoms.

He said: "I thought I was going mad. No one understood. My family and friends thought I was either joking or exaggerating."

The 26-year-old only knew he had had the virus in August after testing positive for antibodies. In September as his senses began to return he then started suffering from parosmia.

He said: "If I put something into my mouth, I cannot hide the fact that it tastes vile.

“And some people are like, surely you can taste now? Surely you are just making a scene? People who are not experiencing it just have no idea.”

Sharp, who is the pastoral manager and safeguarding lead at a school in Gloucester, also finds people's lack of understanding frustrating.

She said: “People tend to make a joke of it because they don't really understand how hard it is to live with.

“My Mum says: it could be worse, you could be blind. But actually, I've lost 40% of my senses and that's a lot to lose.”

SARS-CoV-2 can infect cells that support sensory neurones in the nose and mouth. Without support cells, the nerves can become damaged, causing parosmia.

According to Dr Simon Gane, an Ear, Nose and Throat Consultant at UCL Hospital, the experience of olfactory disorders can be both difficult to communicate and deal with.

He said: “Your sense of smell and taste are much more integrated into your brain architecture so it is not as conscious as sight or hearing.

“If you close your eyes you cannot see anything. But if you block your nose you do not perceive that same loss of signal.

"People take smell and taste for granted, but in reality, we are constantly smelling our environment. It can be very distressing to lose or have that ability altered.”

Those suffering from parosmia and other olfactory disorders have turned to social media during the pandemic, with Facebook groups set up by the charity AbScent growing rapidly as Covid-19 cases increased.

More and more people are following the AbScent Facebook groups. The parosmia group was started three months after the first wave because demand was growing.

For those suffering, the groups have been helpful.

Rogerson said: "It was a bit of a lifesaver because suddenly I realised I was not alone. There were so many other people going through the exact same thing as me. I thought, finally, people that can understand."

Chrissi Kelly founded the AbScent charity after she lost her sense of smell in 2012. For her, the pandemic has helped bring some much-needed attention to the cause.

Chrissi Kelly, founder of the AbScent charity, talks about why people with parosmia describe it as 'vile' and 'disgusting'.

Kelly said: "Historically, parosmia has had little coverage because it is a qualitative disorder. And when you talk about qualitative things, you need to describe them with words.

"You cannot rate parosmia from one to ten. And this defies the normal process of taking data and crunching it."

However, with so many sufferers now on the Facebook groups, AbScent and research partners are able to collect data in real-time. Ultimately, this will lead to better treatments and management strategies for patients. Both of which will be needed because the difficult truth is that parosmia does not often resolve quickly.

Dr Gane said: “I think it will be a legacy of the pandemic. If your sense of taste and smell do not come back quite quickly then generally you will be left with problems for a long time.

“It will be one part of a long-covid spectrum that we still do not really understand.”

Neil Pearce, 62, had what he described as a heavy cold over Christmas, 2017. He then developed parosmia and it lasted for nearly three years. But, finally, in early 2020 he could identify his favourite wine: an Italian Barbera D'asti.

When he heard about people suffering from parosmia post-Covid-19, Pearce joined AbScent's Covid-19 Smell and Taste Loss Facebook group to share his experiences.

Pearce said: "You just need to keep believing you will get it back. Once I started to get just the odd things back, I was confident the rest would come through. And they did. That's the way it works."

Pearce has now got about 75% of his smell and 90% of his taste back.