Many people with ongoing smell loss describe feeling unsure where to turn for help. In a panel discussion hosted by Chrissi Kelly, three people living with long term smell loss shared their experiences of seeking support and answers after Covid. Their stories highlight how difficult it can be to find clear information, and how much difference informed, compassionate care can make.
You can watch the full discussion here:
When clinical guidance is limited
During the early stages of the pandemic, very little was known about why people were losing their sense of smell or how recovery happened. Doctors were forced to work with limited evidence, and treatments that were tried at the time, such as high dose steroids, did not prove effective.
What we know now is different. Research shows that smell training is the main recommended approach for supporting recovery. It is widely used in clinical settings and continues to feature in guidance for post viral smell loss.
Some people found that they had to bring this information to their own appointments. Nick, one of the panel members, ended up explaining smell training to his doctor because the clinician had not encountered the guidance before.
When symptoms are misunderstood
For Cara, the bigger challenge was that her doctors did not recognise parosmia or understand how severe it can become. She experienced extreme reactions to everyday smells and lost so much weight that she needed hospital care. Because the impact of parosmia was not understood, she was first diagnosed with an eating disorder. Only after an ENT consultant involved a dietitian did she receive appropriate support.
Stories like hers show why better clinical awareness of smell disorders is so important.
Timelines are not fixed
A common theme in the discussion was being told that smell loss was permanent. This was said casually at routine appointments, and each person described the shock it caused. Evidence tells a different story, particularly when smell loss begins after a virus. Recovery is often slow, but many people continue to regain function well beyond the one year mark.
In the CKOS community, it is common to hear from people who notice improvement at 15 to 18 months, two years, or even three years after onset. The idea of a one year cut off does not reflect lived experience or research, and it can take away hope at a time when encouragement matters.
To learn more about parosmia and why familiar scents can smell wrong during recovery, you can read our article on understanding parosmia.
The emotional impact is real
The panel also spoke openly about the effect of smell loss on their mental health. They described feeling unsafe in daily life, missing the emotional connection that smell brings, and living in what they called an odourless bubble. Anxiety and low mood were common responses, made harder when clinicians did not acknowledge the seriousness of what they were facing.
Cara and others have shared similar experiences elsewhere. The Pharmaceutical Journal has published a feature that follows several people living with smell distortions after Covid, which reflects many of the same challenges and shows why understanding from healthcare professionals matters.
Greater empathy and awareness in appointments could make a significant difference. Research will continue to raise awareness among clinicians, but the experiences shared in this discussion remind us why patient centred care is essential.
Key Takeaway
Doctor support for smell loss improves when clinicians have access to clear guidance and understand how these conditions affect daily life. Recovery can be slow but remains possible long after the first year, and compassionate care can make the journey easier.
