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The impact of chronic disease on wellbeing and quality of life: The case of Long Covid in Britain

Louise Dalingwater
p. 147-167

Résumé

This article aims to illustrate the effects of the chronic illness Long Covid on health and wellbeing in Britain. It will examine the evidence on this condition and its impact on wellbeing through what has been termed “living systematic reviews”, which refer to data which is updated with relevant new evidence as it becomes available, recognising that this is both a heterogeneous condition and that the literature on Long Covid has become redundant as the disease has progressed. Since the article focuses on the impact on British people’s lives, it will also examine a collection of narratives which are available online through Long Covid health advocacy websites.

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Introduction

1Factors of transmission of Covid 19 are well known to us all having lived through one of the greatest challenges to global health in modern times. Covid 19 is a highly infectious disease caused by SARS CoV2, which was first identified in China in the autumn of 2019. The majority of people infected by the virus have experienced mild to moderate symptoms and have made a full recovery without treatment. Yet a significant number of longer term effects to health and mental wellbeing have been reported. This article is particularly interested in the effects on health and wellbeing of what is termed Post-Covid Condition or Long Covid and described by the Royal College of General Practitioners as:

  • ongoing symptomatic Covid19: signs and symptoms of Covid19 from 4 to 12 weeks

    • 1 National Institute for Health and Care Excellence (NICE), Scottish Intercollegiate Guidelines Netwo (...)

    Post Covid19 syndrome: signs and symptoms that develop during or after Covid19 and continue for more than 12 weeks and are not explained by an alternative diagnosis.1

  • 2 Hannah E. Davis, Lisa McCorkell, Julia M. Vogel, Eric J. Topel, “Long COVID: major findings, mechan (...)
  • 3 Department of Health, National Suicide Prevention Strategy (London, Department of Health, 2002); De (...)
  • 4 Department of Health, 2014, op.cit.
  • 5 Ed Diener, “Subjective well-being: The science of happiness and a proposal for a national index”, A (...)

2A staggering 10% of infections have been reported to lead to Long Covid worldwide.2 Such a condition has been found to have a significant impact on wellbeing. This is true of many chronic diseases and perhaps this may explain to some extent why wellbeing has emerged as a defining feature of health policy in recent years. Good health is considered to be a predictor for, or determinant of, a high level of wellbeing, and also an outcome. There is therefore a clear relationship between health and wellbeing, and recent national publications and policy approaches in the UK have incorporated wellbeing within almost all policy prescriptions.3 For example, the 2014 Department of Health policy brief clearly states that “wellbeing” is a “shared government objective”.4 It contends that raising levels of wellbeing can have beneficial effects on health. Subjective wellbeing has three main components: first, life satisfaction by asking people how happy they are overall with their life; second, emotions (a low level of negative emotions should result in a high level of wellbeing) and; finally, psychological wellbeing and eudaimonic wellbeing5. Objective wellbeing or material wellbeing is somewhat different and can be related to real-life conditions: income, housing, work, educational attainment, home environment, life expectancy, etc. In the area of health there is an overlap between subjective and objective wellbeing, especially given the link between physical and mental health experienced by sufferers of chronic diseases. This is why the study of Long Covid and its impact on wellbeing is so relevant because it has been found to affect both physical and mental health as this article will attempt to show.

3Moreover, in the domain of health, there would seem to be an overlap between wellbeing and health-related quality of life, especially given that the drivers of the two in the research literature are similar. The WHO for example defines Quality of Life as:

  • 6 World Health Organization Quality of Life (WHOQOL) Group, “The World Health Organization Quality of (...)

an individual’s perception of their position in life, in the context of the culture and value systems in which they live, and in relation to their goals, expectations, standards, and concerns. It is a broad ranging concept, affected in a complex way by the person’s physical health, psychological state, level of independence, social relationships and their relationships to salient features of their environment. (WHOQOL Group, 1995, p. 1404) 6

  • 7 Oleg N. Medvedev and Erik Landhuis, “Exploring constructs of well-being, happiness and quality of l (...)

4Medvedev and Landhuis (2018) thus contend that wellbeing and quality of life have similar traits. The overlap has been further recognised with the recent reconceptualisation of subjective wellbeing as synonymous with happiness by Diener (2006).7

  • 8 Fatemeh Samiei Siboni, Zaineb Alimoradi, Vajihe Atashi, Mahmood Alipour and Marzieh Khatooni . “Qua (...)
  • 9 Mary T. Westbrook and Linda L. Viney, “Psychological reactions to the onset of chronic illness”, So (...)
  • 10 Barbara Stacherl and Odile Sauzet, “Chronic disease onset and wellbeing development: longitudinal a (...)
  • 11 Caroline C. Kingdon, Erinna W. Bowman, Hayley Curran, Luis Nacul, Eliana M. Lacerda, “Functional St (...)

5Chronic diseases can have a significant impact on an individual’s quality of life. They can restrict an individual’s ability to live a full and fulfilling life because of diminished general health.8 Notably research has found chronic disease can limit daily life, bring about lifestyle changes. Medical needs have found to result in emotional, psychological, financial and time stressors.9 While the theory of hedonic adaptation claims that, after a period, the individual will return to a baseline of happiness, other research based on the model of adjustment to chronic illnesses found that adaptation to the illness may be successful but equally the individual may continue to face difficulties to adjust to illness. So the theory of hedonic adaptation really depends on the individual and his or her ability to manage the chronic disease in daily life (work and social life), administer medication and receive correct treatment.10 In line with some other chronic illnesses, perhaps the closest comparison being those suffering from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Long Covid has been described as a poorly understood disease.11 Yet it can have a significant impact on the wellbeing and quality of life of those suffering from the illness. The aim of this article is thus to shed light on the impact of Long Covid. It also aims to show, with the case study of the UK, how different economic and social contexts (reduced welfare and access to services for example) can also impact on the quality of life for sufferers of Long Covid. While Britain is considered to be a pioneer in many ways in its recognition and treatment of Long Covid, a closer study of narratives from people living with the disease in Britain can shed light on the multi-factors influencing the quality of life for people living with the disease in this country. The article will thus first review the literature on this condition and its impact on wellbeing through what have been termed “living systematic reviews”. These refer to data which is updated with relevant new evidence as it becomes available, which recognise that this is both a heterogeneous condition and that the literature on Long Covid has been evolving all the time as the disease has progressed. It will also briefly summarise policy papers referring specifically to Long Covid in Britain. Since we are particularly interested in the impact on British people’s lives, it will finish by presenting a collection of narratives written in Britain by individuals who are currently living with Long Covid. The narratives were retrieved from reliable online health advocacy websites. Such patient-reported health care experiences are valuable in terms of ensuring patient-centred care.

Current research on Long Covid and its impact on British citizens

6The WHO (World Health Organisation) has defined ‘post Covid 19 condition’ as that occurring:

in individuals with a history of probable or confirmed SARS CoV-2 infection, usually three months from the onset of COVID-19 with symptoms that last for at least two months and cannot be explained by an alternative diagnosis.12

7Unlike the ONS, the WHO thus defines Long Covid as those reporting symptoms beyond 12 weeks. The NHS distinguishes between two periods and denominations: “Long Covid includes both ongoing symptomatic Covid-19 (4–12 weeks) and post Covid syndrome (12 weeks or more and are not explained by an alternative diagnosis)”.13 For this reason, for the rest of the paper, I will use the more generic term Long Covid to cover both conditions.

Symptoms and causality

  • 14 Nicholas Brough, Sally Abel and Lucy Priddle, “A service evaluation of a community project combinin (...)

8While over 200 symptoms have been reported, the most common symptoms which have been established in the literature are fatigue, breathlessness/shortness of breath and loss of smell. In addition, chest pain and cognitive dysfunctions such as difficulties concentrating (brain fog), headaches, muscle pain, gastrointestinal disturbance, rashes and dizziness, myalgia, insomnia have been found to be common. Anxiety and depression are also quite often reported as symptoms. It has been found that new symptoms may appear after recovery from the initial illness.14

  • 15 Carole H. Sudre, Benjamin Murray, Thomas Varsavsky , Mark S. Graham, Rose S. Penfold, Ruth C. Bowye (...)

9It has not been clearly established what causes and may trigger Long Covid. Some researchers have claimed that the persistence of the disease in reservoirs in the body, for example in the small intestinal epithelium, where it remains active might cause Long Covid. Other research has pointed to a problematic immune response or irreparable damage caused by autoantibodies, hyperactivation of coagulation and platelets. Determining incidence is complicated because of the absence or limited surveillance and a variety of definitions. The other problem is that studies of causality tend to be performed in small groups of selected patients, which does not give an accurate estimate of true incidence and causality in the population.15

Impact

  • 16 In March 2023, the ONS stopped recording Long Covid figures so these are the most recent available (...)
  • 17 Daniel M. Altmann and Christina Pagel, “Long Covid: where are we, what does it say about our pandem (...)

10As of 5 March 2023, 1.9 million people living in private households in Britain reported experiencing Post Covid 19 or Long Covid symptoms (2.9% of the population); that is symptoms continuing for more than four weeks after the first confirmed or suspected coronavirus (Covid 19) infection that were not explained by something else.16 Daniel Altmann, professor of immunology and Christina Pagel, Professor of operational research, reported in the British Medical Journal (BMJ), at the end of 2023, that there were still tens of thousands of people suffering from persistent symptoms of Long Covid that had continued for over three years. While the probability of developing Long Covid at present time is considered low, even a low likelihood means that the disease can still be developed by a significant number given that infection rates are still continuing to evolve. Moreover, those that caught Covid in previous waves are still suffering from the condition.17 So despite the fact that we are no longer facing a pandemic, this chronic disease still presents significant challenges to population health (especially weaker sectors of the population like the elderly, immune depressed and those with little access to health services) and will continue to adversely affect the health and wellbeing of British people.

  • 18 Keri Vartanian, Daniel Fish, Nathalie Kenton, Benjamin Gronowski, Bill Wright and Ari Robicsek, “In (...)
  • 19 Ibid.

11Some studies have specifically concentrated on the emotional wellbeing of Covid patients which could then be extrapolated to the conditions in the UK.18 Indeed, Pardo et al. (2023)19 point to the significant mental health effects of Long Covid and especially those related to anxiety, depression and sleep disorders. They felt it was important to establish the experiences of the patients and to examine how they manage their daily lives. 35 patients were interviewed both individually and as focus groups in Northern Spain. The study focused on three areas: emotional wellbeing, support network and experiences of discrimination, all of which are seen as significant drivers of wellbeing. They reported very low levels of wellbeing, which confirms the data that has found that Long Covid has a significant impact on quality of life. Many individuals suffering from Long Covid have reported anxiety and significant fear for the future (not being able to do their job correctly, reinfection, relapse, etc.). Some participants expressed anger and frustration because of lack of improvement of their health status and lack of medical answers. Social support has helped but there is still quite a lot of ignorance on the condition and stigma. Particularly at the beginning of the pandemic, discrimination was reported from social circles and even health professionals. Issues such as contagion at work and sick leave raised problems too.

  • 20 Vered Daitch , Dana Yelin , Muhammad Awwad, Giovanni Guaraldi, Jovana Milić, Cristina Mussini, Marc (...)
  • 21 Public Health England, “COVID-19: wider impacts on people aged 65 and over - GOV.UK”, 2021, https:/ (...)

12In addition, there are specific risks according to age. A study carried out in Israel, Switzerland, Spain and Italy of 2,333 individuals conducted at five multidisciplinary hospital-based Covid 19 recovery clinics, evaluated after 5 months, showed that older individuals reported higher rates of Long Covid. Women and individuals with obesity were also found to be more at risk. According to this study, the higher burden of Long Covid symptoms among older adults was probably due to subsequent deconditioning and diminished baseline muscle mass and pulmonary reserve, but also due to comorbidities.20 Such findings were then used to produce fact sheet recommendations for the elderly by Public Health England in 2021.21

13There are very few studies on Long Covid conducted on children. Initially less precaution was taken with children and exposure to the disease was not considered to be problematic. However, a British Medical Association (BMA) report posits that for much of the pandemic children were highly exposed and the last to be vaccinated putting them at more risk of catching the virus and thus developing Long Covid as a result.22 An APPG (All Party Parliamentary Group) concluded that the UK Government’s Covid 19 policy in schools had failed to protect children in educational settings and put them at more risk of developing Long Covid. As the pandemic continued, a greater number of children were reported to have the disease, with a prevalence of 98,000 children self-reporting Long Covid (90 000 of which more than 12 weeks from September 2021 to July 2022). A study carried out by researchers at UCL (CloCK study23) found that as many as one in seven children and young children still had symptoms 15 weeks later.24 However, there are difficulties in diagnosing Long Covid in children, especially given limited communication skills in younger children. It is also sometimes difficult to distinguish the symptoms from other infections such as flu and glandular fever. The same is true of fatigue, headaches and difficulties concentrating which may be the knock on effect of general psychological harm from experiencing school closures and isolation.25

  • 26 Theocharis Kromydas, Evangelia Demou, Rhiannon Edge, Matthew Gittins, Srinivasa Vittal Katikireddi, (...)
  • 27 Daniel M. Altmann and Christina Pagel, op. cit.
  • 28 BMA, op. cit.

14A study of different industries also found occupational variations according to risk factors and found that employees in public facing industries, including teaching and education, social care, healthcare, civil service, retail and transport industries and occupations, were more likely to develop Long Covid.26 Some workers with the condition are no longer able to work. In an ONS analysis of Long Covid patients in 2021, 40% reported that the condition was affecting their ability to work with key workers being disproportionally affected. Doctors and health professionals for example have not been offered enough support after developing the condition despite health workers reporting higher levels of Long Covid than the general population. As many as 7.2% of doctors have developed symptoms. The average hospital trust in England reported that they had more than 100 staff absent with symptoms of Long Covid (ONS 2023). Altmann et al. (2023) reported that there has been an increase in the number of people unable to work owing to chronic sickness in comparison to the period before the pandemic and consider that this is in part due to Long Covid.27 Estimates suggest that as many as 80,000 had left the workforce due to the chronic disease. During the height of the pandemic, the NHS did cover Covid 19 sickness for health professionals but this scheme has now ended. While Statutory Sick Pay (SSP) does exist at £96.35 a week for 28 weeks, Britain’s rate of replacement is much lower than other EU countries. Germany for example covers 100% of wages, France 90%, whereas it is approximately 20% for an average pay packet in Britain.28 Moreover, to be eligible for SSP, you need to earn over £120 a week.

Treatment and services provided

  • 29 NHS England, op.cit.
  • 30 Ibid.
  • 31 The National Institute for Health and Care Excellence (NICE) is an executive non-departmental publi (...)
  • 32 NICE, op.cit.

15In June 2021 recognising the significant impact on the population of Long Covid, NHS England published a NHS plan for 2021/22 which set forth key actions the NHS was intending to take to treat the chronic illness. It established 90 post Covid services including specialist diagnosis, treatment and rehabilitation. An investment of £194, 000,000 was made from October 2020 to July 2022 to deal specifically with Long Covid. As much as £30, 000,000 were dedicated to helping general practices support patients and make referrals. In addition, fourteen post Covid specialist children and young people’s hubs were created in England to enable coordination of care and advice specifically for children and young adults. Treatment provided includes both physical and mental health support. The NHS also set up a “Your Covid Recovery” website with online rehab services. However, timely access to these services seems somewhat problematic. The NHS recently carried out a review of services specifically catering for Long Covid or post Covid treatment and many respondents reported difficulties getting a GP appointment and uncertainty about treatment. Patients also complained about not being listened to by healthcare professionals, delays in diagnostics and access to information and advice29. The NHS plan for improving Long Covid services notes that treatment needs a heterogeneous and multidisciplinary team approach with input from various specialities. The problem is that evidence on effective intervention is fairly limited because most studies are too small to determine whether the treatment is really effective. So far meta-analysis 15, antihistamines and Rivaroxaban have shown potential to reduce mortality and are currently being investigated to see if they may also alleviate Long Covid symptoms. Vaccines may also protect populations from the development of the disease. Early data has suggested a 41% reduction in the likelihood of those infected reporting Long Covid after two doses of Covid 19 vaccines. For young people aged 12 and over the reduction in long-term infection was estimated at 27%.30 The National Institute for Health and Care Excellence (NICE)31 in England has issued guidelines for clinical practice and treatment. NICE underlines that the condition requires an integrated multidisciplinary model of care because of the nature of the disease and should bring together healthcare practitioners across specialities to deal with the long term needs of the condition. NICE particularly points to the importance of recognising the impact of Long Covid on mental health, cognition and wellbeing issues.32

16In addition, a number of studies have examined treatment to alleviate the symptoms of persistent Covid symptoms. Indeed, in 2022, a research team in Britain offered a package of care to 25 participants with group sessions of psychoeducation and mind body approaches. Other optional services included physiotherapy and craniosacral therapy. The impact of the interventions was then measured using the Warwick Holistic Health Questionnaire, which is a survey to gauge the effectiveness of the service thanks to participant feedback. After fully engaging in these services 16 participants reported improved mental, physical, emotional and spiritual wellbeing. The authors concluded that treatment, which combined psycho-educational and mind body approaches, seemed to be effective to deal with the condition.33 Some studies point to the necessity of interventions by physiotherapists, but also social care and non-clinical professionals. For example, a systematic review of non-pharmacological therapies carried out in February 2023 found that few treatments existed but that four interventions did provide statistically significant benefits in primary outcomes: tele-rehabilitation, resistance exercises, pilates and neuromodulation.34

Narrative analysis on Long Covid sufferers in Britain

17The above has given a general overview of the literature on Long Covid, its causes, symptoms and policy interventions using both information from major health care providers in Britain and synthesising work by various international research teams. This next section is aimed at delving deeper into Long Covid from a patient perspective to consider what impact this condition has had on British people’s lives. It is interesting to study the context of Britain because the National Health Service (NHS) is suffering from significant pressure despite the UK being a pioneer in Long Covid detection and treatment. Given the pressure on the system and increasing issues with underfunded mental health services, it would seem that it has become increasingly difficult to provide adequate health services for Long Covid. Online health forums are a useful way of informing both patients and caregivers of health conditions and sharing reports on diagnosis, treatment and outcomes.35 For health professionals and policy makers, such reports of their health care experiences are useful to develop treatment and policies which can improve their condition and daily lives, especially regarding illnesses such as Long Covid which are affecting an increasing number of people and the way they live their lives.

Methodology

18A corpus of 19 narratives was collected from four main sources: Long Covid SOS, Long Covid Kids, Long Covid Support and the King’s Fund websites. The former three are registered charities in Britain which have all been granted core participant status in the UK Covid 19 inquiry, which is an independent public inquiry set up to examine the UK’s response to and impact of the Covid 19 pandemic. The King’s website is one of the leading health think tanks in Britain. Even though there are a wealth of narratives available online, these were considered to be reliable sources of information because of the core status they obtained. The individuals suffering from Long Covid range from those who developed the condition in the very early stages of the pandemic to more recent cases. Ages range from young children, essentially those in their early teens (and one younger child) to a man of 72. The chosen method is qualitative content analysis which is a research method which aims at identifying thematic structure and involves classifying by coding and identifying themes and patterns in the text. The analysis was conducted manually without computer aid because of the requirements of said analysis. Indeed, an added aspect of the qualitative content analysis here was to relate the narratives to the concept of wellbeing. So the following studies a range of aspects related to the daily lives of those who suffer from the condition: mental health issues which may impact on their happiness and or satisfaction owing to both mental and physical issues, real life impacts or material wellbeing such as income, housing, education, home environment etc. The aim is therefore to take a holistic approach to the condition. It will also consider whether they have found any treatment, services or policies which have improved their overall wellbeing.

19The analysis of the narratives identified four main themes which have had an impact on the quality of life of the individuals who have developed Long Covid: symptoms, impact on their daily lives, fear and anxiety for the future and treatment and coping mechanisms.

Most common and debilitating symptoms

20Breathlessness and fatigue were two of the symptoms that the majority of the accounts mentioned which confirms main symptoms found in the literature:

I gasp for air like a goldfish in a bowl, my heart rate is through the roof even at rest and nobody can tell me why. I’ve been in so much pain I was convinced my kidneys and liver were failing and at times I thought I wouldn’t come out of this alive. (Paula, 40, Long Covid SOS)

I smile I get up I push on as best I can but for a year I’ve been living with a veil of fatigue that consumes my whole body and being, my personality, the things that make me, me. (Sarah, 45, Long Covid SOS)

 We need fifty words for fatigue. For me, fatigue is not a presence, like tiredness; it’s a complete absence of *any* energy to animate my body. When my fatigue is bad I feel like an inanimate sack of matter. It is also sleeping like the dead, during bad periods for up to 16 hours a day. And it is waking paralysed for many minutes, conscious but physically frozen. (Jo, 35-59, King’s Fund)

21The narratives written by young teenagers also described serious fatigue and sleeping long hours to recover after activities. Other symptoms in the narratives included headaches, gut issues, loss of smell, loss of appetite (for many of the children), chest pains and also mental ill-being such as anxiety (Long Covid Kids).

22The diversity of symptoms and different experiences were important to take into consideration:

Long Covid is unique to the sufferer. There are over 200 symptoms of it and layer that on top of different metabolisms, age, gender, underlying health and existing conditions then how it affects the person can be widely varying. My main symptoms are brain fog, limb pains, pins and needles, occasional tinnitus headaches, chest pains, sensitivity to sound and anxiety. I have not listed fatigue there. That is because I am one of the lucky ones that is not so limited that any activity requires bed rest or taking annual leave to restore. I do suffer physical crashes but mine are very much driven by mental / nervous stimulation and overload (…) I wake up each day like I had 12 pints of strong ale the night before, my concentration is limited, I have tingles in my limbs. I feel vulnerable. It affects my confidence, my verve and generally that tangible contact with my real self. (Rob, 25-35, Long Covid SOS)

Impact on daily lives

23The narratives were very much all focused on the devastating impact this had on their daily lives and their overall wellbeing. In quite a number of cases, before the onset of the illness the narrators had been very healthy, some even extremely fit engaging in regular sports activities.

24Only one person mentioned that she could now take up sport again. The other individuals talked about the inability to walk or do general activities without feeling exhausted. Some had to give up jobs and others lamented about not being able to look after their children properly anymore:

I’m essentially housebound. If I try and walk up the stairs my oxygen plummets to a scary level (…) I’m far from recovered. I can’t do anything, I can’t look after my children, do any simple housework or even walk to the end of the road without fear of collapse. Even a long telephone call or zoom session can put me back in bed for days with severe fatigue. (Sarah, 45, Long Covid SOS)

It wasn’t until early 2022 that I realised that I was one of the growing number of people that have Long Covid. Having made what felt like a steady and sensible recovery, I hit a wall. My symptoms returned and I was waylaid again with several weeks off sick again. (Rob 25-35, Long Covid SOS).

I have two children who are desperately missing the mum they used to have. They want their energetic, lively, happy mum back. Not the one who has to spend the day in bed and gets out of breath reading The Tiger Who Came to Tea. (Paula, 40, Long Covid SOS)

I pushed myself to attend a school appointment and was bedbound for the following two months. (Jo, 35-59, King’s Fund)

25What is particularly disconcerting here is the long-term impact on families and children. In the literature, the long-term impact on children of sick parents has been shown to be a significant risk factor for children to develop illnesses later in life. A systematic review found evidence of an association between parental illnesses, especially those which included mental health symptoms, and the later development of illness in children.36 So children living with parents with Long Covid are at significant risk of developing both mental and physical illnesses later on in life.

26Older individuals among the narrators with the condition also expressed declining wellbeing too and isolation was a common theme: “Our social life is largely non- existent - we can barely manage day-to day chores. (Alice, 56, Long Covid SOS)

27The other problem as we mentioned previously in the literature is receiving financial support even when officially diagnosed with the condition as Alice, an independent artist explained:

I don’t have the energy to fight for support (e.g. disability benefit). This is becoming a serious problem now as the economy reopens - I cannot apply for any work opportunities /exhibitions etc . I am lucky to own my house and my husband has a pension. (Alice, 56, Long Covid SOS)

28The societal impact is thus described as huge in these accounts, not just on the sufferers but friends, family and the society:

When you see statistics for Long Covid sufferers, imagine for each one this additional cluster of dependents and relations who feel the impact. A new set of needs which may now call on health and care services. Not to mention the lost economic activity already apparently showing up in national statistics” (Jo, 35-59, King’s Fund)

  • 37 The NHS describes the five ways to mental wellbeing as connecting with other people, being physical (...)

29Also the burden is not just on physical health but general wellbeing is specifically referred to by a number of sufferers: “Long Covid is as much a mental struggle as physical. When you are debilitated, your 5 ways to wellbeing37 are limited”. (Rob, 35-45, Long Covid SOS)

Fear of the future and diminished wellbeing

  • 38 Sophie Lebel, Brittany Mutsaers, Christina Tomei, Caroline Séguin Leclair, Georden Jones, Danielle (...)

30Added to the huge impact on people’s lives of Long Covid is the uncertainty and fear for the future because of it being an unknown disease. It is debilitating and yet there is no cure and very little treatment: Long Covid thus has much in common with other chronic diseases in that most are incurable and treatment therefore focuses on managing the symptoms. Sufferers have to cope with the persistence and unpredictability of their illness. Significant anxiety and worry about their illness and the recurring or worsening of the illness has been reported in the literature for many chronic illnesses and not just Long Covid. Anxiety, fear and worry of those suffering from a chronic disease has been called health anxiety (HA) which can be defined as arousing distressing emotions (fear), thoughts of danger and physiological arousal. The symptoms can vary but those suffering from chronic illnesses have reported moderate to high level of HA. A systematic review carried out on patients suffering from cancer for example suggested that 49% of patients reported high fear and anxiety for the future.38 Significantly high levels of fear and anxiety were evident in the narratives on Long Covid too:

Will I recover completely or are my lungs and heart damaged? Will I have to live like this forever? Is the virus still inside me? Who knows? The future is very uncertain for us long haulers. (Paula, 40, Long Covid SOS)

We are not only very ill but we are ill with something the medical community know nothing about. (…) It’s honestly like living in an apocalyptic horror film and I just can’t even imagine what going through this would be like in a less stable county or a less stable situation. (Alison, 37, Long Covid SOS)

Stuck in an all too real nightmare. I just want my life back” (Paul, 19, LongCovid Support)

So many people suffering in the darkness of no help, no cure, no direction. It’s hell” (Sarah, 45 Long Covid SOS)

Treatment, policies and action taken

31In addition, and particularly at the beginning of the pandemic, many were dismayed at the lack of medical support and advice. While clinics have been set up for Long Covid in most parts of England, this is not the case in Scotland and children are often excluded from treatment in these clinics:

until the medical professions recognise us all we are in limbo, not one of the hospitalised patients who need care and not a mild case who has recovered. We’re stuck on an island just waiting for someone to see and rescue us. I hope this comes soon. (Paula, 40, Long Covid SOS)

32Comments about the inability for the NHS to cope with this new condition were often referred to:

My GP is hopelessly overloaded and chronic illnesses that aren’t life- threatening are simply not a priority, no matter how debilitating. - in the light of the above I cringe every time I read anything about Long Covid in the NHS. Long Covid services are grossly under resourced, the system is dysfunctional and a lot of the staff are fairly clueless. (Alice, 56, Long Covid SOS)

  • 39 Dean M. Thompson, Lesley Booth, David Moore & Jonathan Mathers, “Peer support for people with chron (...)

33Improving wellbeing and learning to live with the condition seems to be specifically related to the level of support in these narratives. Support groups seem to have been of significant help to those suffering from Long Covid, even more so than clinical support in some cases. This tends to confirm the literature which has shown that health support groups for people living with chronic illnesses and their carers can be effective in helping sufferers and the people around them cope and find a certain resilience against the illness.39

This forum has been a great help, I would have felt lost and lonely without it as friends and family simply don’t understand it and a majority like to simply say that it’s anxiety!! (Cristina, of working age, Long Covid SOS)

Connecting to others in your circumstances is a real benefit. An online work support group has been a great community for sharing ideas, experiences, learning materials and general guidance and understanding.” (Rob, 25-35, Long Covid SOS)

  • 40 Cheryl Tey. (2021) “When medical diagnoses miss the mark and their families don't believe them, som (...)

34While the narrators do not stipulate the online forums they use, organisations such as Long Covid UK etc. all provide forums to share concerns and advice. There are also a number of other fora, especially present on Facebook. It has been estimated that there are at least 100 Long Covid support groups on Facebook. Survivor Corps is one of the largest with more than 166 000 members. While these can indeed help support sufferers, some give more medically secure advice than others.40

Discussion and conclusions

35In common with other chronic illnesses for which there is no cure, those that have developed Long Covid are living with a significantly low level of wellbeing or illbeing. In much the same way as other chronic diseases, those living with the condition have reported high levels of Health Anxiety (HA). The narratives confirmed the literature in terms of the debilitating symptoms, but the analysis of the situation for people living with Long Covid in Britain allowed us to understand to what extent this is currently disrupting people’s lives. Analysis of the narratives showed that while the symptoms could be linked with diminished subjective wellbeing as a direct outcome of the illness, the diminished objective wellbeing because of financial insecurity through loss of jobs or inability to work, is classified as an indirect outcome of the illness etc. Further classification distinguished the different causes of diminished wellbeing (subjective and objective) from not getting a diagnosis over long periods of time, difficulties with treatment/cure etc. However, the testimonials also distinguished factors that help improve the already diminished wellbeing, such as support groups or forums, which helped foster not only mental health via solidarity but also provide access to cures. Having said that the testimonials underlined that while the NHS has set up clinics specifically to provide treatment and support for this condition, it would seem that services vary in the support they offer and many sufferers have been unable to receive treatment. Perhaps one of the most disconcerting findings from both the literature review and testimonials is that there are a significant number of children who are now living with the disease for the long haul. They are not always diagnosed early so there is a risk that they may be not be getting the right treatment, which represents a major challenge for the future health of the British population. With a greater time lag, further research could analyse the discourse which focuses on narratives on successful treatment and cure since some sufferers have managed to overcome the illness. The sources used for the narrative analysis here however were reports by sufferers who had not yet recovered.


Louise Dalingwater is a Professor of British Politics at Sorbonne Université. Her current research focuses on health and wellbeing in the United Kingdom, with some comparative research on European health systems (notably France) and global health policy research. She is visiting professor at the East European University. She is also chair of the International Health, Wellness and Society research network based in Illinois, United States and PI for the IIDT India/Sorbonne project “Digital Health”.

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For narratives:

King’s Fund: https://www.kingsfund.org.uk/blog/2022/09/facing-long-covid

Long Covid SOS: https://www.longcovidsos.org/

Long Covid Kids: https://www.longcovidkids.org/

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Notes

1 National Institute for Health and Care Excellence (NICE), Scottish Intercollegiate Guidelines Network (SIGN), Royal College of General Practitioners (RCGP), “COVID-19 rapid guideline: managing the long-term effects of COVID-19 - NICE, RCGP, and SIGN”, 2021, https://www.nice.org.uk/guidance/ng188/resources/

2 Hannah E. Davis, Lisa McCorkell, Julia M. Vogel, Eric J. Topel, “Long COVID: major findings, mechanisms and recommendations”, Nat Rev Microbiol 21, (2023), pp. 133–146, https://doi.org/10.1038/s41579-022-00846-2

3 Department of Health, National Suicide Prevention Strategy (London, Department of Health, 2002); Department of Health, Choosing Health: Making Healthy Choices Easier, Cm 6374 (London, DofH, 2004); Department of Health, Wellbeing and Health (London, Department of Health, 2012); Department of Health, Wellbeing: Why it Matters to Health Policy ( London, Department of Health, 2013); Department of Health, “The Relationship between wellbeing and health, Factsheet” (DofH, 2014).

4 Department of Health, 2014, op.cit.

5 Ed Diener, “Subjective well-being: The science of happiness and a proposal for a national index”, American Psychologist 55 (1) (2000), pp. 34–43; Michael Argyle, The Psychology of Happiness: Second edition (Hove/East Sussex: Routledge, 2001).

6 World Health Organization Quality of Life (WHOQOL) Group, “The World Health Organization Quality of Life Assessment (WHOQOL): position paper from the World Health Organization”, Social Science and Medicine 41(10) (1995), pp.1403–1409, DOI 10.1016/0277-9536(95)00112-k.

7 Oleg N. Medvedev and Erik Landhuis, “Exploring constructs of well-being, happiness and quality of life”, Peer J 6 (e4903) (2018), https://doi.org/10.7717/peerj.4903

8 Fatemeh Samiei Siboni, Zaineb Alimoradi, Vajihe Atashi, Mahmood Alipour and Marzieh Khatooni . “Quality of Life in Different Chronic Diseases and Its Related Factors”, Int J Prev Med 10(65) (17 May 2019), doi: 10.4103/ijpvm.IJPVM_429_17. PMID: 31198500; PMCID: PMC6547796.

9 Mary T. Westbrook and Linda L. Viney, “Psychological reactions to the onset of chronic illness”, Soc Sci Med 16 (8), pp.899–905; Leire Ambrosio , G.Senosiain, Juana Maria García, Mario Sagrario, Anaut Bravo, Sara Díaz De Cerio Ayesa, María Eugenia, Ursúa Sesma, Neus Caparrós and Mari Carmen Portillo, “Living with chronic illness in adults: a concept analysis”, J Clin Nurs 24 (23) (2015), pp. 57–67 ; Adem Sav, Elizabeth Kendall, Sara S. Mcmillan, Fiona Kelly, Jennifer A. Whitty, Michelle A. King and Amanda J. Wheeler “’You say treatment, I say hard work’: treatment burden among people with chronic illness and their carers in Australia”, Health Soc Care Community 21 (2013), pp. 665–74.

10 Barbara Stacherl and Odile Sauzet, “Chronic disease onset and wellbeing development: longitudinal analysis and the role of healthcare access”, Eur J Public Health 34(1) (6 February 2024), pp. 29-34. doi: 10.1093/eurpub/ckad167. PMID: 37802926; PMCID: PMC10843952.

11 Caroline C. Kingdon, Erinna W. Bowman, Hayley Curran, Luis Nacul, Eliana M. Lacerda, “Functional Status and Well-Being in People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Compared with People with Multiple Sclerosis and Healthy Controls”, Pharmacoecon Open (4) (December 2 2018), pp. 381-392, doi: 10.1007/s41669-018-0071-6. PMID: 29536371; PMCID: PMC6249197.

12 World Health Organization, “Who coronavirus (COVID-19) Dashboard”, 2012, https://covid19.who.int/

13 NHS England, “The NHS Plan for Improving Long Covid Services” NHS England, 2022, https://www.england.nhs.uk/publication/the-nhs-plan-for-improving-long-covid-services/

14 Nicholas Brough, Sally Abel and Lucy Priddle, “A service evaluation of a community project combining psychoeducation and mind-body complementary approaches to support those with long covid in the UK”, Eur J Integr Med.,55 (October 2022), 102182, doi: 10.1016/j.eujim.2022.102182. Epub 2022 Aug 21. PMID: 36035093; PMCID: PMC9392656.

15 Carole H. Sudre, Benjamin Murray, Thomas Varsavsky , Mark S. Graham, Rose S. Penfold, Ruth C. Bowyer, Joan Capdevila Pujol, Kerstin Klaser, Michela Antonelli, Liane S. Canas, Erika Molteni , Marc Modat , Jorge Cardoso , Anna May, Sajaysurya Ganesh, Richard Davies, Long H. Nguyen, David A. Drew, Christina M. Astley, Amit D . Joshi, Jordi Merino, Neli Tsereteli, Tove Fall, Maria F. Gomez , Emma L. Duncan, Cristina Menni, Frances M. K. Williams, Paul W. Franks, Andrew T. Chan, Jonathan Wolf, Sebastien Ourselin, Tim Spector, Claire J. Steves, “Attributes and predictors of long COVID”, Nat Med 27 (2021), pp. 626–31.

16 In March 2023, the ONS stopped recording Long Covid figures so these are the most recent available data. ONS (2023, March). Excess deaths in England and Wales: March 2020 to December 2022, https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/articles/excessdeathsinenglandandwalesmarch2020todecember2022/2023-03-09

17 Daniel M. Altmann and Christina Pagel, “Long Covid: where are we, what does it say about our pandemic response, and where next?” BMJ 383(2023), p2972, doi:10.1136/bmj.p2972.

18 Keri Vartanian, Daniel Fish, Nathalie Kenton, Benjamin Gronowski, Bill Wright and Ari Robicsek, “Integrating patient-reported physical, mental, and social impacts to classify long COVID experiences”, Sci Rep 13 (2023), 16288. https://doi.org/10.1038/s41598-023-43615-8; Yu Deng, Minjun Park, Juanjuan Chen, Jixue Yang, Luxue Xie, Huimim, Li Wang and Yaokai Chen, “Emotional discourse analysis of COVID-19 patients and their mental health: A text mining study”, PLoS ONE 17(9) (2022), e0274247, https://doi.org/10.1371/journal.pone.0274247; Mario Samper-Pardo, Barbara Oliván-Blázquez, Rosa Magallón-Botaya, Fatima Méndez-López, Cruz Bartolomé-Moreno and Sandra León-Herrera, “The emotional well-being of Long COVID patients in relation to their symptoms, social support and stigmatization in social and health services: a qualitative study”, BMC Psychiatry 23(1) (January 2023), p.68, doi: 10.1186/s12888-022-04497-8. PMID: 36698111; PMCID: PMC9875186.

19 Ibid.

20 Vered Daitch , Dana Yelin , Muhammad Awwad, Giovanni Guaraldi, Jovana Milić, Cristina Mussini, Marco Falcone, Giusy Tiseo, Laura Carrozzi, Francesco Pistelli, Mayssam Nehme, Idris Guessous, Laurent Kaiser, Pauline Vetter, Jaume Bordas-Martínez, Xavier Durà-Miralles, Dolores Peleato-Catalan, Carlota Gudiol, Irit Shapira-Lichter, Donna Abecasis, Leonard Leibovici, Dafna Yahav, Ili Margalit, “ESCMID study group for infections in the elderly (ESGIE). Characteristics of long-COVID among older adults: a cross-sectional study”, Int J Infect Dis. 125 (December 2022), pp. 287-293, doi: 10.1016/j.ijid.2022.09.035. Epub 2022 Oct 1. PMID: 36191820.

21 Public Health England, “COVID-19: wider impacts on people aged 65 and over - GOV.UK”, 2021, https://www.gov.uk/government/publications/covid-19-wider-impacts-on-people-aged-65-and-over

22 BMA, “Addressing the Health Challenge of Long Covid”, British Medical Association, 2022, https://www.bma.org.uk/media/6051/20220333-addressing-the-health-challenge-of-long-covid-final.pdf

23 CLoCk study of Long Covid in children and young people (CYP), funded by NIHR

24 Snehal M. Pinto Pereira Manjula D. NugawelaNatalia K. RojasRoz ShafranKelsey McOwatRuth SimmonsTamsinFordIsobel HeymanShamez N. Ladhani Emily Y. Cheung Lana Fox-Smith Emma Dalrymple Terence Stephenson   “Post-COVID-19 condition at 6 months and COVID-19 vaccination in non-hospitalised children and young people”, Arch Dis Child, 108(4) (April 2023), pp.289-295, doi: 10.1136/archdischild-2022-324656. Epub. PMID: 36599625; PMCID: PMC10086284.

25 BMA, op. cit.

26 Theocharis Kromydas, Evangelia Demou, Rhiannon Edge, Matthew Gittins, Srinivasa Vittal Katikireddi, Neil Pearce, Martie van Tongeren, Jack Wilkinson and Sarah Rhodes, “Occupational differences in the prevalence and severity of long-COVID: analysis of the Coronavirus (COVID-19) Infection Survey”, Occup Environ Med., 80(10) (October 2023), pp. 545-552, doi: 10.1136/oemed-2023-108930. Epub 2023 Sep 28. PMID: 37770179; PMCID: PMC7615205.

27 Daniel M. Altmann and Christina Pagel, op. cit.

28 BMA, op. cit.

29 NHS England, op.cit.

30 Ibid.

31 The National Institute for Health and Care Excellence (NICE) is an executive non-departmental public body which publishes health guidelines in the UK.

32 NICE, op.cit.

33 Daniel N. Brough Sally Abel and Lucy Priddle, op. cit.

34 Joht Singh Chandan Kirsty R. BrownNikita Simms-WilliamsNasir Z. BashirJenny CamaradouDominic HeiningGrace M. TurnerSamantha Cruz RiveraRichard HothamSonica Minhas Krishnarajah NirantharakumarManoj SivanKamlesh Khunti Devan RaindiSteven Marwaha Sarah E. Hughes Christel McMullanTom MarshallMelanie J. CalvertShamil HaroonOlalekan Lee Aiyegbusi”, “TLC Study. Non-Pharmacological Therapies for Post-Viral Syndromes, Including Long COVID: A Systematic Review”, Int J Environ Res Public Health 20(4) (16 February 2023), 3477, doi: 10.3390/ijerph20043477. PMID: 36834176; PMCID: PMC9967466.

35 Rashmi PatelFabrizio Smeraldi Maryam AbdollahyanJessica IrvingConrad Bessant, “Analysis of mental and physical disorders associated with COVID-19 in online health forums: a natural language processing study”, BMJ Open 11(11) (November 2021), e056601, doi: 10.1136/bmjopen-2021-056601. PMID: 34740937; PMCID: PMC8573296.

36 Kristine Pape, Johan Håkon Bjørngaard, Karin A.A. De Ridder, Steinar Westin, Turid Lingaas Holmen, and Steinar Krokstad, “Medical benefits in young Norwegians and their parents, and the contribution of family health and socioeconomic status, The HUNT Study, Norway”, Scand J Public Health 41(5) (2013), pp. 455–62, https://doi.org/10.1177/1403494813481645 PMID: 23508948.

37 The NHS describes the five ways to mental wellbeing as connecting with other people, being physically active, learning new skills, giving to others and paying attention to the present moment (mindfulness).

38 Sophie Lebel, Brittany Mutsaers, Christina Tomei, Caroline Séguin Leclair, Georden Jones, Danielle Petricone-Westwood, Nicole Rutkowski, Viviane Ta, Geneviève Trudel, Simone Zofia Laflamme, Andrée-Anne Lavigne, Andreas Dinkel,Health anxiety and illness-related fears across diverse chronic illnesses: A systematic review on conceptualization, measurement, prevalence, course, and correlates, PLoS One 15(7) (July 2020), e0234124. doi: 10.1371/journal.pone.0234124. PMID: 32716932; PMCID: PMC7384626.

39 Dean M. Thompson, Lesley Booth, David Moore & Jonathan Mathers, “Peer support for people with chronic conditions: a systematic review of reviews”, BMC Health Serv Res., 22(1) (March 2022), 427, doi: 10.1186/s12913-022-07816-7. PMID: 35361215; PMCID: PMC8973527.

40 Cheryl Tey. (2021) “When medical diagnoses miss the mark and their families don't believe them, some COVID long-haulers turn to online groups for help.” Business Insider, https://www.businessinsider.com/covid-long-haulers-are-turning-to-online-groups-for-help-2021-4?r=US&IR=T

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Louise Dalingwater, « The impact of chronic disease on wellbeing and quality of life: The case of Long Covid in Britain »Observatoire de la société britannique, 32 | -1, 147-167.

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Louise Dalingwater, « The impact of chronic disease on wellbeing and quality of life: The case of Long Covid in Britain »Observatoire de la société britannique [En ligne], 32 | 2024, mis en ligne le 31 décembre 2024, consulté le 17 mars 2025. URL : http://journals.openedition.org/osb/6621 ; DOI : https://doi.org/10.4000/13bz0

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Louise Dalingwater

Sorbonne Université, HDEA

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