Sharing experiences of smell loss

Chrissi brought together three people living with long term smell loss following Covid-19 to explore their experiences of seeking support for and answers to their condition. Cara, Nick and Paola candidly shared their experiences of losing their sense of smell and the shocking lack of information they met with.

Familiar stories

When so little was known about anosmia and the recovery process at the beginning of the coronavirus pandemic, doctors were working in the dark. Treatments – like strong steroid prescriptions – were tried and found to be ineffective. What is now known is that Smell Training is the most effective treatment to support recovery and is the central recommendation of the British Rhinological Society. In Nick’s case, he found himself educating his doctor!

Cara developed extremely severe parosmia, but the condition was not understood by her doctors. Unable to eat because of severe reactions to odours, Cara spent time in hospital with malnutrition. She was diagnosed with an eating disorder and felt stigmatised by the treatment she received there. It was only when an ENT consultant called in a dietician that she started to receive appropriate support.
 

Timescale for recovery

The panel all shared a similar experience of being incorrectly told the loss of smell was permanent. In fact, evidence shows that cases of smell loss following a viral infection actually have a good rate of recovery, but it is frequently a long process. Nick was warned by the doctor that his sense of smell wouldn’t come back and he remembers the experience like being “hit in the face with a wet mop”. Cara was also told to expect permanent loss and was extremely distressed by the casual way this bombshell was delivered. Sadly, the lack of empathy shown by the doctors in these cases led to anxiety and depression.

AbScent frequently hears reports of people being told that if you haven’t recovered smell after one year, it’s unlikely that you will recover. This is simply not true – members of our online communities regularly celebrate the return of smell at 15 to 18 months, two years after, and sometimes three years or more. The suggestion that one year is a magic cut-off point is false and can be unhelpful as it dashes hope and prevents patients from persevering with Smell Training.

The impact on mental health

No doubt, the negative impact on mental health is one of the most serious consequences of smell loss. The panel talked courageously about their struggles and the devastation of coping with this kind of bereavement and uncertainty. They described how living without smell affected their enjoyment of life, the fear of not being able to detect fire or rotten food, and the empty existence of living in an odourless ‘bubble’.

The panel called for more empathy from the medical profession, and a need to take the condition seriously. However, we know that it’s only by publishing peer reviewed research papers that we can truly educate doctors and start changing the story for people with smell loss.

If you would like to support our movement for change, please consider making a donation to AbScent’s work and life-changing research.

You can watch the full webinar here: AbScent Presents 

March 04, 2022