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September 22, 2020

When food has lost its joy

Altered eating with a smell disorder

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One of the most debilitating aspects of life without smell is the impact on the way we eat. Especially with parosmia; it’s bad enough not tasting the food, but when even water smells disgusting, both physical and mental wellbeing is badly affected. It’s one of the top topics of conversation in the groups and forums.

In the webinar on Tuesday 15 September, we brought together the knowledge and experience of three specialists to share skills and techniques to navigate through an altered eating difficulty. Dr Duika Burges Watson is founder of the Altered Eating Network and lecturer at the  University of Newcastle, Professor Vincent Deary is a health psychologist at Northumberland University, and Sheri Taylor is specialist in nutrition rehabilitation. They have worked extensively with patients struggling to eat because of smell loss, particularly as a result of head and neck cancers but the findings apply to all anosmia and parosmia.

The discussion looked at what we know about the connection between smell and eating, and the panel shared some helpful strategies to meet the challenges, plus practical tips to experiment with. It’s clear that there is no one single approach that works for everyone. Individual preferences and circumstances mean that you have to be your own sensory detective and be brave enough to experiment to find what works for you.

Vincent talked about his experience of working with a wide variety of patients working to overcome the challenges of their recovery. He highlighted anosmia as an invisible disability and that others ‘just don’t get it’. Having to explain each time is wearing and that alone can take the joy out of eating. He encouraged people to focus on what to say to those who do want to understand to help build your story.

Duika went on to explain how anosmia and parosmia can affect weight loss and gain. When the experience is so off-putting, you don’t want to eat. On the other hand, you can end up bingeing to feel satisfied. The difference between being full and being satisfied has been demonstrated by research. Duika explained that it’s normal for people with anosmia to have food cravings as they search for that feeling of being satisfied. She highlighted the importance of being conscious about whether you want something or whether you like something to try and control that temptation.

Talk to the experts

Strategies and tips to eat well when you can’t smell well are summarised in the linked articles. There is no magic formula , but there are lots of things to try if you’re struggling. The panel were united in their overall advice: be curious, be your own detective to discover what works and what doesn’t. Vincent observed that those with the curiosity to find new ways to experience food and the persistence to keep trying were generally the most successful in managing altered eating. And from the PhD work of Helen Carter, he recommended talking to the experts - other people with smell disorders. Sharing experience, hearing what worked for someone else and what you’ve found out, often down to the detail of a brand that seems better than another, is key to managing your condition. 

And a final word: be kind to yourself. “It’s a journey, a struggle, an experiment” said Vincent. As with any job of work you need to take a day off to rest and recover.

For practical tips and information, take a look at these articles:

Five ways to overcome anosmia eating challenges

Using the Sensory Star for a better eating experience

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