We may not yet understand much about the causes and implications of the collection of symptoms occurring post COVID-19 infection that has been labelled Long COVID. But we already understand far more than we think we do about the experiences of people living with Long COVID.
Long COVID meets the standard definition of a long-term disabling condition. It lasts over an extended period of time and affects multiple areas of day-to-day life. Guidelines on managing the long terms effects of COVID-19 (published by NICE) define Long COVID as
…signs and symptoms that continue or develop after acute COVID-19. It includes both ongoing symptomatic COVID-19 (from 4 to 12 weeks) and post-COVID-19 syndrome (12 weeks or more).
As many as 205 different symptoms have been identified affecting 10 different body systems. Symptoms can develop in different ways, with progress/relapse, along with deteriorating or improving pathways. The British Society for Immunology has suggested that Long COVID may be the result of the immune system’s response to the COVID-19 virus rather than the virus itself. Symptoms are apparent in multiple organ systems and chronic symptoms such as fatigue and shortness of breath can last for months after the initial acute phase. The British Psychological Society identify common side effects of recovery from COVID-19 as poor sleep, negative effects on memory and attention, anxiety and low mood. The similarities with symptoms of Chronic Fatigue Syndrome or myalgic encephalomyelitis (ME) such as fatigue, muscle pain, headaches, poor sleep and concentration have led to calls on Twitter for wider recognition of the debilitating impacts of post-viral illness.
So we have a long-term disabling condition potentially linked to post-viral inflammation that has a huge impact on daily life and will likely require ongoing specialist healthcare provision. In other words, we have a condition that shares many similarities with many other long-term conditions which have been researched extensively over many years and where we have an excellent understanding of patient experiences.
As far back as 1970, Freidson was challenging us to think about people who got stuck in the sick role, living with conditions from which they were unlikely to recover. Research on the ways in which people make sense of illness and disease and the impact it has on the self, or in terms of their interactions with others and with society more widely is widespread. Subjective experiences are explored in a body of work incorporating the lived experiences of people diagnosed with a broad range of heterogeneous long term conditions such as: epilepsy, multiple sclerosis, Parkinson’s disease, rectal cancer, psoriasis, arthritis, tuberculosis, motor neurone disease, cleft lip and palate; diabetes and HIV. This research must be considered when making sense of how best we can respond to Long COVID.
For example, the findings of these studies suggest that whilst the diagnoses, symptoms and prognoses vary enormously, there are common experiences that emerge in social interactions between an affected individual and the social environment in which they live and act. Drawing on the work of Peter Conrad, this commonality of experience can be condensed into four key areas: uncertainty; biomedical concerns; impact on social relations and stigma. In March 2021 the National Institute of Health Research (NIHR) published a review on Living with COVID-19 which focused on the evidence around ongoing or Long COVID, and the relevance of each of these four key areas to understanding Long COVID can clearly be seen.
Firstly, Uncertainty permeates the literature on Long COVID. For example, prevalence levels are difficult to ascertain because of a lack of conformity in the way that it is measured but the NIHR review suggests that as many as 10% of people who have had COVID-19 have had at least one symptom that has lasted more than 12 weeks and that significant numbers of people have symptoms beyond 6 months post COVID-19 infection. The different clusters of symptoms, body systems affected and trajectories are also, as yet, not well understood. As such, many people with Long COVID clearly live with ongoing uncertainty as do those with many other long-term conditions.
Secondly, Long COVID is a multi-system condition with associated complex medical management. Biomedical concerns are key as patients juggle multiple appointments with different specialists and manage symptoms in primary and secondary care and at home. Symptomatic, rehabilitative, physical and psychological care needs have all been highlighted. All underpinned by uncertainty. Tom Kingstone and colleagues found, in an interview study with people living with Long COVID, that managing the symptoms of Long COVID was labour intensive and that finding an empathetic GP willing to take them seriously was essential.
Thirdly, the impact on wider social relations is also clear (and unsurprising). The NIHR survey found that 71% of respondents felt that Long COVID was affecting their family life while 39% said it affected the care they were able to provide for children and other dependents. Long COVID also affected the ability to work for 4 out of 5 respondents and had wider implications for family finances.
Lastly, Stigma, or fear of stigma (felt stigma) is apparent in accounts of people tweeting under #longCOVID. In the words of Dr Nisreen Alwan a leading Long COVID activist: “To avoid being disbelieved or labelled as a malingerer you avoid seeking empathy, support and healthcare. This is not right.”. In an open letter to the journal Social Science and Medicine, Elisa Perego and colleagues explain that the term Long COVID itself was coined by patient activists to challenge ‘widespread assumptions about disease severity and duration’. The trauma of living with ongoing, often debilitating, symptoms whilst fearing that you will be disbelieved is apparent and echoes experiences of those living with ME/CFS (with so-called medically unexplained symptoms) who often experience stigma and discrimination both from those around them and also from healthcare professionals.
We really do not know enough about Long COVID yet, but we can make educated, research-informed, patient-led decisions about support and care needs and set appropriate care in place whilst we learn more about the specifics of this condition or group of inter-related symptoms. And the attention that comes with this high-profile condition may also help those who have battled to get the recognition and support they need whilst living with ME and other similar conditions.