Joanne’s Story: The Emotional and Mental Effects of Post-Viral Smell Loss
Joanne’s anosmia began in September 2019. The fifty-nine-year-old mother of grown-up twin daughters had just returned to Kent from a holiday in Spain. Rather run-down and very busy in her NHS administrative role, she struggled to sleep and ended up contracting a nasty virus – sore throat, bad cold, wheezy chest and aching, flu-like symptoms.
After four or five days, Joanne realised she couldn’t taste or smell anything. She went to her doctor who told her there was nothing to worry about and that everything would return to normal in a few weeks. No antibiotics or medication was prescribed. Two weeks later Joanne had recovered from the virus, yet still missing her smell and taste, she went back to the doctor. Referred to an ENT consultant, he conducted an endoscopy investigation yet found nothing wrong with her nasal passages and sinuses. Confused by the outcome, Joanne’s anxiety increased when the nasal steroid prescribed by the consultant failed to return her olfactory senses.
“I was unstable and upset as there did not seem to be a clear answer to as why this had happened.”
She returned to her doctor and then the specialist who gave her devastating news, that her senses would never come back. “He could not give me any hope, saying my olfactory system had been destroyed.” Joanne offers a poignant summing up of how she felt. “It was as though something was taken away from me that I love the most.”
The impact was evident in several ways. “At the start I gained weight as I would try eating anything to see if I could taste.” Holidays too lost their gloss. “My biggest passion is travelling. I travel at least 4 times a year to experience new cultures and places. But with anosmia it’s not the same – you can’t even smell the plane nor the different air aboard. It’s very lonely.”
Joanne recalls a special occasion diminished by her condition. “For my 60th birthday I went on an Asian cruise. It was very challenging as I felt like part of my personality had gone.”
In keeping with many struggling with anosmia, Joanne fretted about body odour. “I was paranoid that I might smell, even though I did everything the same as I would before.”
It’s often experiences with our nearest and dearest that reveal anosmia at its most insidious and isolating. “With family dinner times or restaurant visits, things were different. It was difficult to be around people saying, ‘taste this Joanne, doesn’t this taste lovely?’. I felt very left out and in my own little world even though surrounded by people who loved me.”
She makes a startling and frightening confession. “It was April 2020 – eight months in. Knowing it had been going on that long I did experience suicidal thoughts.”
So great was her feeling of loss that it took ten months before she was able to talk openly about it without breaking down. “Losing smell was more difficult than the lack of taste – not being able to smell my husband anymore, my lovely daughters, my home where I have lived for years.” It took numerous counselling sessions, focusing on plus-points like her general good health and mobility, before she confronted her anosmia without the tears.
When she was out in the wider world, Joanne encountered further challenges. “Anosmia is a hidden disability. When you meet new people, they have no idea what you’re going through as they cannot see it – there is no ‘visual reminder.’ I feel no one understands or has awareness. I have had people say, ‘at least you do not have cancer’. Of course, I would not wish that on anyone, but it does not give them the right to downplay my disability.”
Joanne searched widely yet unsuccessfully for remedies: nasal rinsing, acupuncture (twice), reflexology and smell training. Some report improvement after the latter yet not so Joanne. “From the very beginning I tried smell training with aromatherapy oils. But I no longer do this as it became repetitive and disappointing.”
In the fullness of time, health and safety issues also came to the fore. “Unfortunately, I’ve left the gas on twice now. It’s not visible and I cannot smell it. One time it was left on for hours and it wasn’t until my husband got home that he rushed to turn it off.”
It is abundantly clear that Joanne’s journey has been both emotionally and mentally traumatic. Yet importantly, she now sees some light at the end of the tunnel. “In the last few months, I have had random ‘whiffs’ of different smells. Each whiff has lasted like 2 seconds. Examples include lavender, Thai fish sauce, a particular perfume called Angel, bacon, and the smell of spraying the fields.”
While Joanne’s reminders of her lost world are bitter-sweet for their fleetingness, they do offer hope. “These whiffs have made me feel that the doctor saying my system was destroyed could be wrong.”
There is much to be learned about the senses of smell and taste and Fifth Sense are ardent supporters of research. With the olfactory system holding mysteries even to experts, it’s hardly surprising how Joanne feels about her recent experiences. “I am confused as to why I only have a whiff once of the same thing.”
Reaching out to Fifth Sense and sharing her story suggests Joanne has turned the corner in her personal battle against anosmia. She is keen to stress how far she has come since those awful suicidal thoughts. “I feel positive now, much better than in 2020. I’ve pulled myself together for sure and I am a very healthy weight enjoying my keto lifestyle.”