(L-R: Laura and Kirstie Goodchild)
A University of East Anglia (UEA) student and her sister, who both suffered with anosmia (smell loss) and parosmia (smell distortion), will be speaking about the impact of their experiences on Thursday 11 May at the UEA-Fifth Sense Smell and Taste Symposium 2023.
This two-day symposium is being held on Thursday 11 and Friday 12 May, in the Council Chamber of the Registry building on UEA’s campus, though the sisters are only speaking on the first day of the event.
Kirstie Goodchild, who is studying MSc Occupational Therapy at UEA, first struggled with anosmia in April 2020 following Covid infection. Though she experienced a brief period of normality when her senses returned for two months, she later developed parosmia, with some nauseating consequences. As the senses of smell and taste are so intricately linked, parosmia can cause foods that were previously appetising to become unpalatable.
Kirstie said: “The first thing I noticed was that my sweat was smelling rotten. That was very distressing for me because I could consistently smell it even though nobody else could, which meant I felt the need to shower all the time.
“There was so much I couldn’t eat because of the taste. It’s so hard to describe the experience of eating foods with these distorted tastes and smells to someone who hasn’t lived it – the closest way is by imagining eating something very poisonous, rotten and bitter. I tried to power through at mealtimes but there was just no way to stomach most foods – it was almost a reflex to spit it out.”
Kirstie’s experience living and coping with anosmia and parosmia is one of the primary reasons she chose to study Occupational Therapy, as she explains:
“Facilitating engagement in meaningful activities is part of the ethos of Occupational Therapy. This health care approach aims to help people to overcome obstacles in their life by utilising and adapting meaningful activities. My experience of the positive impacts of managing my own sensory symptoms through adapting food activities were a big motivator and reflection point in my decision to study Occupational Therapy.”
Both sisters’ senses returned to normal by the summer of 2021. Since then, Kirstie and her sister Laura have volunteered with Fifth Sense, a UK charity that supports people affected by smell and taste disorders. The charity strives to address the lack of understanding within society of the role that the senses of smell and taste play in our lives.
“My sister and I have been helping out in different ways, including talking about the importance of a positive mindset for an online parosmia support we attended. I really struggled with parosmia until I accepted that it might be permanent. It was only when I acknowledged that this could be forever that I started to make the most of it and find ways to make eating enjoyable again.
“Optimising your way of thinking is something that we tried to get across at a Fifth Sense parosmia support meeting: try to remain positive, and attempt to be practical and pragmatic with what's going on rather than letting it get you down or hold you back. Of course, it’s easier said than done and it takes time to adjust your mind, but I think the real recovery for me was when I did make that cognitive shift.”
It’s not just at mealtimes that experiencing a loss or distortion to your smell can have an effect, it can also raise legitimate practical safety concerns – such as not being able to detect gas, smoke, out of date food or poor ventilation.
According to Fifth Sense, who are co-hosting the Smell and Taste Symposium alongside UEA, the psychological impact of smell and taste disorders on sufferers can be profound – with anosmia sufferers often talking of feeling isolated and cut-off from the world around them and experiencing a ‘blunting’ of the emotions. Smell is also closely linked to the recall of sentimental memories.
Research has also shown that loss of olfactory function can be an indicator of something far more serious. Smell loss occurs with both Alzheimer's and Parkinson’s disease, and studies have shown that a diminishing sense of smell can be an early sign of the onset of both conditions.
As a result of long Covid, in addition to other factors, there are still high numbers of people across the region who are suffering with smell and taste disorders, and while great strides are being made around research and care, the exact mechanism behind post-viral olfactory dysfunction (PVOD) isn’t fully understood.
Prof Carl Philpott, Professor of Rhinology & Olfactology in UEA Medical School, explains why this symposium is important:
“We are running the symposium to help increase knowledge and skills amongst medical professionals when managing patients with smell and taste disorders, including practical information on smell and taste testing.
“Our work through Fifth Sense has demonstrated the difficulties patients face in getting access to clinicians who can help manage their disorders, so educating clinicians can help with this. Furthermore, one year on from the last symposium where we announced the research hubs, we want to show evidence of projects that have arisen out of the priority setting partnership for research into smell and taste disorders.”