invisible disease with a devastating impact

Losing your sense of smell or “disturbing” it is not as rare as you might think: one in 20 people experience it at some point in their life. It can happen due to chronic sinusitis, damage caused by a cold virus or even a head injury. It is also sometimes a precursor to diseases of the nervous system such as Parkinson’s and Alzheimer’s. But compared to hearing and vision loss, he receives little research or medical treatment.

We wanted to better understand the issues faced by people with olfactory disorders, so we analyzed written and personal reports on the anosmia (loss of sense of smell) of 71 people. The texts revealed several themes, including feelings of isolation, relationship difficulties, impact on physical health and difficulties and costs for seeking help. Many people also commented on doctors’ negative attitude towards losing their sense of smell and how difficult they found getting advice and treatment for their condition.

Significant damage

Loss of smell makes people vulnerable to environmental risks, such as food and gas leaks. It also has a negative effect on a range of activities and experiences, potentially causing significant harm. In reality, perhaps this is not surprising given the extra dimension that the sense of smell gives to the enjoyment of food, the exploration of our environment and the recovery of memories. So our sense of smell is both a life-saving sense and an improvement in life. Losing it can have the opposite effect. Indeed, recent studies in the United States and Scandinavia show that losing your sense of smell is a risk factor for dying younger.

What it is like to live without the sense of smell.

Our research has shown that anosmia has led to physical concerns including diet and appetite. Due to reduced eating pleasure, some participants reported reduced appetite resulting in weight loss. Others have reported a general decline in the quality of their diet with a reduced perception of flavors leading to an increase in the intake of low nutritional value foods (especially those rich in fat, salt and sugar).

Emotional disorder

The emotional negatives experienced by the sick include embarrassment,
sadness, depression, worry and mourning. We have seen evidence that has shocked every aspect of life. These ranged from daily worries, such as personal hygiene, to the loss of intimacy and the breakdown of personal relationships. Some participants reported that they could not take pleasure in occasions that would usually be a cause for celebration. The inability to link smells with happy memories can make these events disappointing.

At the basis of these emotions was the loss of enjoyment of the activities, the difficulty of expressing the impact of the symptoms of anosmia and little sympathy or understanding by outsiders. Others included reduced socialization, no effective treatment and little hope of recovery. Many participants described a profound effect on their relationships with other people because of their sense of smell. These range from not eating together to more intimate relationships, especially sex.

The financial charges described included the cost of private referral and alternative treatments. The effects have been profound for some, especially if their profession or safety depends on it. Participants often described negative or unnecessary interactions with general practitioners and specialists, such as ear, nose and throat surgeons. Participants were concerned about the lack of empathy. Unlike glasses or hearing aids, simple solutions for the loss of smell are not yet available. But although no reversible cause can be identified, at least we can now provide clear information and support.

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