For the last three years, Covid long haulers have had to become their own advocates and researchers as they lobby for recognition, funding and proper healthcare. Their knowledge has been hard-won against a backdrop of sickness. They’ve pushed through symptoms that ravaged their previously able-bodies and become the experts of their own disease. 

That is why we decided that all the symptoms on this website should be written by patients, for patients.  As our co-founder Jenene Crossan says “They poured their hearts, their souls and their deep determination to find just enough energy to put their experiences down for others to benefit from”. 

Although we do not intend to give medical advice, the articles have been fact-checked by a wonderful doctor who is suffering from Long Covid too. 

About the author

I was 34 when I caught Covid-19 in mid-2022. Before the pandemic, my life consisted of being a mother, part-time study, full-time mahi | work and going to the gym.

Life changed dramatically when I developed Kowheori Roa | Long Covid. Fatigue replaced gym workouts and brain fog replaced academic study. It didn’t take my kids long to figure out I was saying yes to much more TV and PlayStation than ever before!

Some days I can’t get off the couch. Folding the washing makes me breathless. I continuously worry about keeping my job, and my career progression.

One of the most harrowing aspects of Long Covid is losing my sense of smell. So much of life’s joy is centred around this sense. The smell of freshly cut grass, a bunch of roses and a whiff of a perfume can instantly transport you to powerful memories. I am now isolated from so many moments because I can’t smell.

– Female, Pacific/European/Indian, Tāmaki Makaurau/Auckland
<em> Scentless Isolation by Tracey Thorp<em>

A brief summary of Loss of Smell and Long Covid

Most people only lose their sense of smell from Covid-19 temporarily. Unfortunately, some people experience a long-term loss. Current theories suggest loss of smell is due to ongoing brain inflammation from Covid-19, creating an injury to the olfactory system.

When we smell, the olfactory nerves in our nose transport the scents to the brain. Smell is the only sense that travels directly to the brain. Other senses must journey via the thalamus, which acts as an ‘information switchboard’ where the senses get interpreted. The fact that smells bypass the thalamus is why scientists think it is the sense most likely to evoke memories.

Loss of smell can manifest in a few different ways. Some people have a total loss of smell (anosmia), and others have a reduced capacity to smell and taste (hyposmia). A third option is that the senses become ‘rewired’, leading to a distortion of smells and tastes (parosmia). This can result in strongly unpleasant smells (phantosmia).

In my experience

The first time I lost my sense of smell, I regained about 80% of it after six months. I lost this sense again during my second infection and have been unable to smell since. Losing my smell has reduced my quality of life enormously.

Did you know smell is the only sense that is fully developed in the womb? Smell is actually a core part of what makes us human, although most people view it as one of the least-important senses. Without it, our taha tinana (physical wellbeing), taha hinengaro (mental wellbeing) and taha wairua (spiritual wellbeing) all weaken.

Small and large moments sum up smell loss; it took losing my smell to realise it is a gorgeously poetic, primal sense. Smell is a powerful trigger of memories, such as our mother’s perfume or the shampoo we used as kids. It’s a link to our traditions, such as swimming in the salty ocean over summer, or the smell of BBQs. It chemically links us to others.

Smell is also necessary for safety. I now cannot tell if I’ve turned the gas off or if something is burning in the oven. I question my sanity with loss of smell because sometimes, I’ll get a whiff of petrol while filling up my car. And then I second-guess myself, wondering, “Did I really smell that or is that a phantom smell?”

What others say Loss of Smell feels like

Others say losing their sense of smell and taste is a scary, isolating and very emotional experience. It can bring about feelings of anger, sadness, frustration, anguish and grief.

“Without my smell, I feel zoned out from life. It’s like I am walking around in a plastic box. I see things but can never truly feel them.” – Sarah

What I and others have tried

  • Smell training guided by Abscent dedicated to helping people recover their smell.

  • Talking with a medical professional about trying steroids to kickstart the sense of smell.

  • Zinc nasal spray. Zinc deficiency could be a contributing factor to ongoing smell loss.

  • Vitamin A nasal spray. Studies show can this āwhina | help regenerate nose receptor cells.

  • Speaking with a trained counsellor to manage the mental and emotional affects.

The best advice I received

The single best piece of advice I received was to monitor your progress. Any changes can be so gradual that often you’re not aware of making progress. Monitoring your progress enables you to celebrate the small wins.

How others can help

Loss of smell can be profound to the person experiencing it, but it is invisible to others. Encourage your loved one to share their experiences and explain what it means for their life. Don’t try to make them feel better by saying, “Well, at least you can’t smell bad smells!”

Those with partial smell loss might react badly to the smell of foods they previously enjoyed. So check in with them about whether their dietary preferences have changed.

Read more about Loss of Smell

Bee Wilson writes in The Guardian that smell loss is “one of the more unsettling forms of human disability, and one of the least understood. It’s a double trauma: you’ve lost something you probably never realised would matter. Where damage to other senses is recognised as traumatic, loss of smell is seen as trivial.”

Also in that article, Tom Laughton explains how losing your sense of smell isolates you from the people and the world. He says, “With smell, when breathing in, the world comes inside us. Without smell, when I see things, they just stay where they are. They are nothing to do with me.”

Dr Maurice Curtis, a principal investigator at Brain Research New Zealand, explains that brain cells sit in the roof of the nose. “The brain cells (neurons) that detect chemicals that form odours (odorants) are the only neurons directly exposed to the outside world…

“Each breath of air exposes millions of neurons to hundreds of odorants that activate a different combination of a possible 400 receptors leading to millions of possible combinations of receptors being activated.”


Content shared on this website is for informational purposes only. It should not be taken as a substitute for professional medical advice. Always seek the advice of a qualified healthcare professional regarding a medical condition, diagnosis or possible treatments. Long Covid Support Aotearoa is not liable for risks associated with using or acting upon the information provided on this website.