Lesley’s Story: A Challenging Journey of Post-Viral Smell Loss
Everyone’s talking about Covid 19 right now. Fifth Sense has been tracking the reported link between this novel virus and smell loss which you can read here.
It’s worth remembering though that many and varied viral infections have always been with us. They frequently disrupt the olfactory system, causing any of anosmia or hyposmia (a severely reduced sense of smell), parosmia (smell distortions) or phantosmia (phantom smells when real odours are not actually present).
Post-viral anosmia is known to contribute to at least 12% of all anosmia cases. Other information – while only anecdotal – suggests it could be the cause of smell loss in as many as 1 in 4 people.
This type of post-viral loss appears to be more prevalent in women aged forty to seventy. Sixty-one-year-old Lesley Wolstencroft is a typical case in point.
Courtesy of a timed and dated photo, Lesley knows precisely when her anosmia journey began. “I did not know it at the time, but it started during a holiday in Scotland, at 13:32hrs on the 3rd May 2016. I had just taken a picture of Hadrian’s Wall, stepped down, sneezed and began sniffling.”
Over the next few days, the normal symptoms of a head cold set in. But afterwards, she noticed that her sense of smell and taste had not returned. “I waited almost a month for it to better itself. I tried over the counter products. I then talked to my GP. I had several prescriptions. Finally, I had a referral to the ENT department within East Lancashire Hospitals NHS Trust.”
Lesley has existing partial disabilities. She has a hearing aid. She wears prescription spectacles. She also suffers from partial numbness – which requires various medical aids and physiotherapy. Yet, to emphasise the seriousness with which she takes her anosmia, Lesley stresses that her loss of smell is total rather than partial.
In keeping with many of the stories heard by Fifth Sense, Lesley was obliged to wait a considerable time to see a specialist – in her case, eighteen weeks. Olfactory loss affected Lesley the way it affects so many – by diminishing the sense of self. “By the time the ENT appointment arrived I’d lost so much of what makes me, me. I so missed the pleasure of odours and tastes I couldn’t recall, of plants and flowers – sweet peas are my favourite – the outdoors and eating out.”
Covid 19 has reminded us all of the unbelievable job our health service does, the sheer hard work and dedication of our doctors and nurses. Yet smell loss is difficult to define clinically, difficult to treat practically and – let’s face it – unless you’re personally afflicted, difficult to fully understand. Perhaps for these reasons, health professionals seem to struggle when dealing with anosmia patients.
“I had variable experiences of East Lancashire Hospitals NHS Trust. Some staff had sympathy, but the majority lacked knowledge, empathy and understanding. I was processed and dispatched, rather than listened to and understood.”
Lesley had a nasal endoscopy and eventually a scan but, in her own words, “had to fight for the tests.” The general line from the hospital was that, once lost, the sense of smell is very unlikely to return. The only advice she got was to ensure she had a smoke detector. “There was absolutely no help, training or support on how to cope with this hidden disability. I found out more from a Medicine and Me event by Fifth Sense, held at the Royal Society of Medicine in London, 2017, than I ever learnt from medics in Lancashire.”
If you are someone similarly affected by post-viral anosmia, Fifth Sense has better news than Lesley heard from her NHS Trust. Studies have shown that recovery is more common in patients who suffered post-viral olfactory loss than with any other causation of anosmia. It isn’t possible to predict how long it will take for things to improve and recovery is more likely to be partial than complete. But one study published in 2014 found that over 80% of participants experienced subjective improvement in olfactory ability within a year of the initial loss.
Finally, smell training can be a valuable aid for post-viral patients. It is thought that smell training may stimulate regeneration of the olfactory receptor cells following their damage by a virus. For more on smell training visit https://www.fifthsense.org.uk/smell-training/ or for post-viral loss generally visit https://www.fifthsense.org.uk/post-viral-olfactory-loss/