Chrissi Kelly, Founder of the charity AbScent, explains that COVID-19 reveals the underappreciated burden of smell disorders
As cases of COVID-19 soared in the early part of 2020, it quickly became obvious to some experts and the public that the virus was affecting the sense of smell and taste. As the world enters the second year of the pandemic, 5.455 million people in the UK have been affected by the virus, with an estimated 48.47% experiencing changes to the sense of smell.
In addition to the obvious issues with food and fears about safety (inability to smell fire or natural gas), mental health and quality of life can be profoundly affected. Depression, anxiety, feelings of detachment, disturbed relationships, weight loss and gain, and loss of sense of self are some of the common issues and feelings described as the lived experience by people in our online support groups dedicated to people with COVID-19 related smell disorders.
COVID-19 related smell disorders
The problems of olfactory (smell) dysfunction were well known before the pandemic, but it is only now that the distress caused by the condition is being appreciated by the general public. Awareness of the poorly understood conditions of anosmia (total smell loss), parosmia (distorted sense of smell, generally very unpleasant), and phantosmia (smell perceptions where no known trigger is present) have been raised by the many journalists who have experienced the problem first hand and reported their stories, both in the UK press and internationally.
An indication that loss of smell and taste might be a symptom of COVID-19 surfaced as early as February 2020 on social media. This was swiftly confirmed by a number of early studies.
Another article highlighted cases of the virus where smell impairment was the only symptom. This was an important point because, until May 2020, isolated loss of smell was not considered a reason to self-isolate, and affected patients were able to continue circulating and spreading the disease. Sixteen months after those first cases, the short and long-term effects are being revealed. One report suggested that 85% of those with “milder symptoms” of the disease are more likely to lose a sense of smell. While 90% of cases are expected to resolve within six months, and many sooner, 10% experience persistent problems.
What support is there for olfactory loss?
There are few treatments for olfactory loss, which has meant that health care providers have not been able to offer patients much support in the past. Quite naturally, those who have experienced smell problems as a result of COVID-19 have looked to rhinologists for answers, but in the absence of treatments, they are left frustrated and feeling that there is no support. While there is an unprecedented amount of research underway to find treatments for smell disorders in the wake of the pandemic, these take time to execute, write up, and put to peer review. It will take time for treatments to become available.
What has come to light in the last 16 months is the importance of peer support for a condition that almost always defies description and is difficult for family and friends to relate to. The AbScent networks, which went from 1,500 members on the eve of the pandemic to over 65,000, have been a case in point. The ability to be heard and validated by those in a similar situation has proven to have great value. AbScent, a charity registered in England and Wales, polled its members one year after the start of the pandemic. Eighty-five per cent of respondents felt that they needed greater support for their mental health, and a similar number stated that they needed assistance with their altered relationship with food. The support available in traditional medical settings could be supplemented with help in the areas of psychological and dietary needs until treatments for smell disorders can be found.
