On 12 July 2020, I woke up feeling really sick. A few days later, I went into my bathroom to light a candle (which is a daily ritual for me) and when I blew out the match, I couldn’t smell the smoke. Then I went to drink some Gatorade and I couldn’t taste it. Within a couple of days my smell and taste had gone from 100 to nothing, completely – zero taste or smell.

However, I had a lot of others symptoms which masked just how difficult it was to be without taste or smell; I was very much focused on my respiratory system, the headaches, fatigue etc. Smell loss wasn’t my focus at that point. Once those symptoms started improving then the distortion of smell and taste became prevalent. I went from not smelling anything to suddenly vomiting in my kitchen after attempting to eat tacos I’d made

My mental wellbeing was impacted heavily

My anxiety hit its worst after a scary incident at home – I actually burnt my kitchen. A fire started in my oven while I was in my office working and I couldn’t smell the smoke. My dog was barking but I thought he was just trying to get my attention to play with him. When I finally came downstairs, my kitchen was filled with smoke.

These are some of the pieces people don’t always understand about loss of smell and taste – the things that can mess with you mentally – because I got to the point where I was terrified to cook in case something caught fire again.

After a few months, I went to see my primary care doctor and he tried four different types of medication to help with my anxiety. He said “we can’t fix it, but we can put a band aid on it” and we were finally able to find a suitable medication. I developed hallucinations around smell during this time, so being on medication helped my anxiety because when I woke up in the middle of the night and smelt ‘smoke’, I knew that was not real.

I am 43, super active, I do yoga – all that wonderful stuff. And I always believed that if I just exercised and was positive that I could get myself through anything difficult. And I was not able to do that with this.

I also saw two therapists because of my smell disorder – a behaviour therapist and a family counsellor – which allowed me to share my feelings and have them understand that this really is an awful experience for me.

It’s not an easy thing to say “I need help” – there’s still a stigma around needing medication and feeling like you’re weak or can’t cope. But there’s nothing wrong with asking for help or needing medication. This has made me a better mother, sister, employee.

People are talking about smell loss a lot more now which is great because when I lost my smell early in the pandemic, it was still a really new thing and I don’t think people had any idea of the impact it can have on people. I had comments like “you should be grateful you’re alive’. Even now, I’d say there is still a feeling of people who have not experienced smell loss to really want to engage with it or talk about it. I still feel like I have to be careful about who I talk to about it. There are some friends who haven’t been able to understand why I don’t want to go out to dinner.

How the AbScent community has helped

Thanks in part to the wonderful support of the AbScent community, I know it’s acceptable to say “I don’t want to go to Thanksgiving dinner”. I know if I’m having a bad day, I can join in the Network conversation and have supportive people who know what I’m going through.

I remember at one point my husband hugged me and I just burst into tears and said “I can’t be around you, because the body wash that you’re using is making me feel ill”. If I’d had no-one to talk to about that, it would feel really lonely. But being able to talk to a complete stranger on the other side of the world (in the Network), talking about something that’s hard to admit – that support is priceless.

Focus on your wellbeing

A year in, I started to put my wellbeing and mental health at the forefront of everything;  I didn’t always do that before. That is the one positive that has come out of my smell disorder– I take better care of myself. I have down time. I might take an hour to go and get a facial; it doesn’t bring my taste and smell back, but it’s an hour for me, to totally relax. 

It’s coming up to three years since I first lost my sense of smell and taste and I am taking very small baby steps. I try to stay happy by focusing on what I can smell – spicy mustard (which I put on EVERYTHING!), BBQ crisps (chips), parsley, sugar snap peas, tomatoes, lemon and grapefruit. So in the case of grapefruit, I have grapefruit candles, wipes, countertop spray – and that’s how I make myself happy. Nothing smells ‘bad’ anymore which is wonderful.

My advice to anyone going through this, particularly if you have recently lost your sense of smell or taste is to be kind to yourself, ask for help and know that it will get better. Seek help from the AbScent community – most of your questions will have been either asked before or will be answered by someone who has gone through something similar. We’re on a journey but I am seeing people recover after a similar amount of time as I’ve been without smell and taste, so I am still holding out hope.

Read more about parosmia.

For dietary tips while living with parosmia, hear from a dietitian or watch our webinar on ‘working out what you can eat with parosmia‘.