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Introduction
By Danielle Hitch
If this is your first visit to the textbook, please take a moment to read the About This Book chapter to get the most out of your experience.
Learning Objectives
After reading this chapter and completing the learning activities, you will be able to:
Reflect upon your own experience of the COVID-19 pandemic and the emerging presence of Long COVID.
Understand the unique character of Long COVID as a patient-identified syndrome.
Analyse the apparent gap between healthcare and lived experience expert understanding of Long COVID.
Examine classifications of Long COVID symptoms and their potential impact on support and services.
Explore whether Long COVID should be considered a disability and the practical implications of the ongoing debate on this question.
Identify ‘visible’ and ‘invisible’ Long COVID symptoms and consider their impact on your approach to practice.
Understand the importance of the wider context surrounding Long COVID to your knowledge and skills when working with people living with this syndrome.
The first of many waves …..
In the closing days of 2019, news began to emerge from China of a new and initially mysterious respiratory disease.
The first confirmed case was identified on December 8th 2019. By the end of that month, an infectious disease surveillance system based on artificial intelligence raised the first alert about rising case numbers [1]. The virus causing the disease was identified as Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) in the first week of January 2020, and the disease it causes was named ‘COVID-19’ by the World Health Organisation (WHO) on 11 February 2020. By then, cases had been reported across 25 countries [2], as the infectiousness and virulence of COVID-19 became increasingly apparent. On 11th March 2020, case numbers had escalated to the point where WHO declared COVID-19 to be a pandemic [3].
We acknowledge the pandemic has been extremely difficult for many people, and this activity may cause you some discomfort or upset. You do not have to proceed with this reflection if you do not wish to, and please seek support from others if you find it has a negative impact on your health or wellbeing.
Unlike many of the other illnesses, conditions and disabilities we work with as health professionals and other caregivers, everyone has first-hand experience with COVID-19. Please watch the following video from the World Health Organisation and reflect on how your community responded in the earliest day of the pandemic.
What stands out for you?
With the benefit of hindsight, is there anything that should or could have been done differently?
How did those early days feel for you as an individual?
PPE became a part of everyday life. Photo by Danielle Hitch, CC BY 4.0.
For me, the early days of the pandemic passed in a whirlwind of redeployment to front-line duties at work and the complete reorganisation of my duties at home. While the rest of my community was living through the first two (of what would become six) lockdowns, my partner and I were working longer hours than ever as healthcare workers. Our days were blurred together, and we were lucky to have five minutes together as I arrived home and he left for his workplace. In the first six months of the pandemic, there were 886 COVID-19 deaths in Australia [4] and 1.12 million deaths globally [5].
While Australia had been relatively spared, people remained terrified of COVID-19 infection. I often spoke to healthcare workers in tears about their diagnosis, particularly those with pre-existing chronic diseases. I shared their anxieties, as a person with chronic lung disease also caring for elderly and seriously ill relatives. We had all watched the news reports with scenes of overflowing hospitals, and the thought of struggling for breath in a crowded corridor or dying in isolation from loved ones was beyond horrific. However, as winter began to lift and the weather got warmer, optimism started to return and people began to wonder if the worst was finally behind us. The lifting of a 111 day lockdown in October felt like a new beginning, but unbeknownst to many, another wave was beginning to hit our shores.
Patients were the first to identify that a significant subset of people was experiencing persistent symptoms and disability following their acute COVID-19 infection. A tweet by a doctor and lived experience expert Elisa Perego on 21st May 2020 [6]contains the first recorded use of the term ‘Long COVID’. Patients with these ongoing problems initiated online support groups and began to organise campaigns to raise awareness about the syndrome. Grassroots efforts to raise the alarm about Long COVID emerged in multiple countries, enabled by the reach of the internet and social media platforms. In America, the term ‘long hauler’ emerged, coined by a patient called Amy Watson after the trucking cap she wore on the day she was tested for COVID-19[7].
“Long Covid has a strong claim to be the first illness created through patients finding one another on Twitter: it moved from patients, through various media, to formal clinical and policy channels in just a few months”[8].
Without an official name from authorities, Long COVID was rapidly adopted into both vernacular and professional language. By July, it was utilised in World Health Organisation communications and had appeared in the British Medical Journal [9]. Patients were also taking the lead in the embryonic research on the syndrome, with patient-led surveys playing a crucial role in the world’s initial understanding of what we were all dealing with [10]. While there are many past examples of patients (henceforth known as lived experience experts) challenging the knowledge and practice of formalised healthcare, Long COVID is a rare example of them taking the lead. This raises some interesting questions about the nature of expertise, which is a recurring theme throughout this book.
“How scientists engage with knowledge about new diseases affects how meaning about a disease accrues, how terminology solidifies, and which evidence is prioritized” [11]
An ongoing area of contention and debate between healthcare and lived experience experts is the classification of COVID-19 infection as mild, moderate or severe. The United States National Institute of Health considers oxygen saturation as measured by pulse oximetry (SpO2) to be the key parameter in their clinical classification of COVID-19 infection severity, which ranges from asymptomatic to critical [12]. However, other classification approaches proposed are based on biomarkers such as D-Dimer [13], Computed Tomography (CT) visual quantitative analysis [14] and immuno-phenotyping [15]. However, as noted in the following blog post, mild symptoms are always mild.
Learning Activity (25 minutes)
Part A
The existing classification systems for COVID-19 infection are mostly based on the acute phase of infection. Still, there is not necessarily a linear link between the severity of the initial illness and those experienced in the post-acute phase.
How would you describe the apparent gap between how healthcare and lived experience experts characterise the severity of their COVID-19 infection? Use the Padlet below to comment on the apparent gap between how healthcare and lived experience experts characterise the severity of their COVID-19 infection. What implications could these different perceptions have for the issues such as the development of new treatments and therapies, and/or patient engagement?
You can also comment on other posts, but remember. This is a public board, and please do not include any identifying information. This padlet is best viewed in full-screen mode.
Part B
An integrative classification for defining Long COVID symptoms has been developed, which describes the status of symptoms over time.
Reflect on the benefits and disadvantages of these models. What could a classification system based on time reference points enable or support in practice? How well do you think these models of classification align with the perspective of lived experience experts?
By August 2020, the inverted commas around ‘Long COVID’ began to disappear in media accounts which might be interpreted as a sign of growing acceptance for the term. However, three years later, they still reappear regularly in the literature. A challenge for everyone in this field is the instability of Long COVID definitions and descriptions. There are a huge number of potential presentations, and so the scope and boundaries of what ‘is’ and what ‘isn’t’ Long COVID are extremely fuzzy. While some criticise ‘Long COVID’ as being too vague and all-encompassing, lived experience experts and others argue this accurately reflects the uncertainty that pervades this area. The editors of this book agree with Callard and Perego[16] that lived experience experts with diverse experiences and recovery trajectories must be included in the ongoing deliberations about the terminology and definitions used for Long COVID.
A ‘mass disabling’ event?
In response to a TikTok about the long-term effects of COVID-19 infection, disability advocate Imani Barbarin asserted, “I can’t stress this to you all enough, but Covid-19 is a mass disabling event. People are becoming disabled because of Covid19. This society, America in particular, is not prepared for it—at all.”
I’d like to take a moment here to acknowledge that people with Long COVID use several different terms to describe their experiences. The word ‘recovery’ was chosen in the title of this book to reflect an improving trend in health and wellbeing over time. It was also chosen from the perspective of ‘personal recovery’ which entails being “able to create and live a meaningful life and contribute to your community” regardless of the presence of chronic or complex conditions[17]. However, I acknowledge that not all people with Long COVID feel they are recovering and there are aspects of their health, wellbeing, experience and identify that may never be the same again. Referring to something as ‘normal’ or ‘typical’ is also very triggering for some people, who point out (quite rightly) that we don’t yet know what ‘normal’ is for Long COVID. Other potential options (such as managing, surviving and living with) were considered but may also be problematic in other ways. The use of the word ‘recovery’ throughout this book is not intended to impose a particular perspective or language on the lived experience of people with Long COVID. It is one of many ways to describe the syndrome, and health professionals and other caregivers should use the terminology preferred by each individual person.
Not everyone characterises their Long COVID as a disability. This term carries centuries of stigma, discrimination and stereotyping, and tends to focus on what people can’t do (rather than what they can). People may also choose not to identify as ‘disabled’ because they don’t want to be defined by their health status. Alternatively, people may choose to take on this identity as a means of advocating for their needs or as a strategic decision to gain access to the services and supports they need. An alternative is to call Long COVID a condition, illness or disease, and there is now growing acceptance of the reality of its impact on health and wellbeing. While healthcare professionals refer to Long COVID as a syndrome, this is not a term the general community would choose. The section that follows explores the framing of Long COVID as a disability, and the differing perspectives this offers our understanding of the syndrome. This is not to say that all people with Long COVID must identify has having a disability – only the person experiencing it gets to decide what part (if any) Long COVID plays in their personal identity.
There are three main models of disability – medical, biopsychosocial and social. These models differ in their perspectives on the causes of disability, their focus and the intervention they support.
The Medical Model of Disability
The medical model of health is present in all areas of modern healthcare. While it is most usually associated with medicine, it is also adopted by some other health professions. This model prioritises the diagnosis and treatment of diseases and injuries through interventions, such as medication, surgery, and other procedures. The medical model defines health as the absence of disease or illness, and therefore the goal is to cure or effectively manage conditions by reducing or eliminating symptoms. Health professionals who adopt this perspective utilise objective tests and assessments to guide their interventions and often specialise in a specific body system or structure.
In this model, disability is caused by one (or more health) impairments, which cause a lack of function according to personal and/or other norms. In Long COVID, the medical model is primarily focused on understanding and relieving the various symptoms of this syndrome, which requires the knowledge and experience of multiple medical and other healthcare specialties.
The medical model has been the foundation of the huge advances made in healthcare in recent centuries, and practice from this perspective can undoubtedly have a positive impact on patients. However, the medical model has also been criticized for providing a narrow definition of disability and for not considering the impact of social and environmental factors [18].
The Biopsychosocial Model of Disability
“Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity” [19].The biopsychosocial model of health is a more recent development that asserts that health and illness arise from the complex interactions between biological, psychological, and social factors. The International Classification of Functioning, Disability and Health (ICF) is a biopsychosocial model developed by the World Health Organization (WHO) that provides a framework for classifying disability which is intended for use across multiple disciplines and sectors [20]. The structure of this textbook is founded on the ICF (see below); however, we acknowledge this is not the only way of considering disability in Long COVID.
In this model, health professionals work with patients to identify and address physical symptoms, psychological factors and social issues contributing to their disability. This means inter-related influences (for example, their social support network, stress levels, lifestyle habits, socio-economic status, personal perspectives of their illness or disability, etc.) are integrated into assessment and treatment, in addition to presenting medical or biological factors. The biopsychosocial model supports a multidisciplinary approach to care and management because multiple health professions have expertise in the many potential influences on health and illness. In Long COVID, the biopsychosocial model looks at a wider range of potential influences in the patient’s personal context, including the broader societal impact of the pandemic.
The biopsychosocial model is broadly seen as building on the medical model and has become widely accepted and practised in modern healthcare. However, it has also been criticised for being vague and lacking clarity about the interactions between biological, psychological, and social factors [21]. The complexity of the model also makes it challenging to implement into practice, and some believe culture and spirituality are not given sufficient attention [22].
The Social Model of Disability
People with disability originally developed the social model of health. It focuses on the role of social and environmental factors in causing health and illness. In this model, a person is disabled by their social and cultural environment rather than their impairment. Therefore, in contrast to the other models, the social model of disability targets the root causes of health inequity by advocating for social justice and promoting policies and actions to address the underlying social determinants of health. In Long COVID, the social model seeks to switch the focus from the ‘deficits’ of people with this syndrome to the responsibility of the broader community (including those in positions of power) to be inclusive of their needs.
Please watch the following video for an overview of this and other models.
All three of these models have a presence in the healthcare system and will be represented in the content of this textbook. They are, therefore, not necessarily incompatible, as noted by Rudnick [23].
“The dichotomy between the medical model of disability and the social model of disability is false, as these models are neither mutually exclusive nor jointly exhaustive. Disability can be caused by both health impairments and social circumstances, and other factors, such as personal and environmental factors, can cause disability” (p.1).
The primary (but not only) differences between the models are due to their scope or focus and how they define disability.
PART A
Use a copy of the table below (Downloadable Table Template) to reflect on the advantages and disadvantages of each model, specifically in relation to Long COVID.
Model
Medical Model of Long COVID
Biopsychosocial Model of Long COVID
Social Model of Long COVID
Advantages
Disadvantages
Relationship to other models
PART B
There may be elements of your practice that align with more than one model, and the scope of your work will be heavily influenced by the service system in which you work. Which (if any) of these models resonates with your work with people recovering from COVID-19? Reflect on or discuss their presence (or absence) in your work.
“I was actually thrown out of a doctor’s office …. [they said] ‘it’s a made-up illness’, so I was wasting her time” (F, 30-49 years)Recognition of Long COVID as a disability (or not) has serious implications and impacts on the daily lives of people with this syndrome. Identification as a person with a recognised disability is a crucial criterion for accessing support services, resources and accommodations. Many countries have legislative instruments, such as Disability Discrimination Acts, that prohibit discrimination and promote inclusion and accessibility in everyday life for people with disability. Currently, the United States of America is one of the few jurisdictions that officially recognises Long COVID as a disability and provides guidance around inclusion and accessibility. However, the legal status of the syndrome is far from settled in other countries meaning that access to formal support and services varies significantly depending on where you live. As the highlighted quote from one of our research participants shows, lack of formal recognition can also be a cause of stigma and discrimination, which is a known psychosocial contributor to poorer health experiences and outcomes.
Learning Activity (10 mins)
Read the following analysis from the British Medical Journal, which discusses some potential consequences of Long COVID being recognised as a disability.
Is Long COVID recognised as a disability and/or specific condition in your jurisdiction?
What supports and services can and can’t people with Long COVID access in your community?
Disability legislation often reflects the tenants of the United Nations Convention on the Rights of Persons with Disability, which has been signed and ratified by most (but not all nations). Clickhereto learn more about this important human rights instrument.
Now you see me …..
Another important dimension of COVID-19 recovery and Long COVID is the ‘invisibility’ of many symptoms. Use the following activity to reflect on what you can see and what you can’t in your own practice. This may differ depending on your scope of practice – in other words, what you are ‘looking for’ as a health professional.
Learning Activity (10 mins)
You have been provided with a list of the most common symptoms reported by people with Long COVID. Please remember these are only the most frequently described – Long COVID can manifest in a huge variety of signs and symptoms, and you will need to develop an individualised symptom profile with each person you work with. Consider each in turn and move the card into the box that best describes how you would identify each symptom as a health professional. Reflect on how much you can and cannot see about the symptoms your patients are experiencing.
Instructions
You can only put each symptom in one box.
‘Direct observation’ includes objective tests/evaluation and your observations in clinical/home/community environments.
‘Cannot be directly observed’ includes symptoms only accessible by patient reports or patient-rated outcome measures.
ADL stands for activities of daily living
This activity is best viewed in full-screen mode.
Do not press ‘check’ – this activity has no right or wrong answers.
Reflect on how much you can and cannot see about the symptoms your patients are experiencing.
People with Long COVID often comment on the additional difficulties they encounter when their disability is not obvious or directly observable. These challenges are well-known in the broader disability community, as highlighted in the following video.
When diversity is not represented in lived experience expertise, patients are subjected to epistemic injustice [24] where the knowledge about Long COVID is skewed by excluding marginalised groups. Culturally and linguistically diverse (CALD) patients and those living with disability are particularly at risk of having their symptoms dismissed or underplayed [25]. The voices of marginalised people (including those living with chronic conditions) remain mostly unheard despite the compounding impact of the pandemic and Long COVID on the disadvantages and challenges they face every day.
While the impairment and disability caused by Long COVID can also be mostly invisible, the pandemic has bought long-held attitudes towards a range of other aspects of disadvantage into the light. Ableism, sexism, racism and ageism have all been amplified during the COVID-19 pandemic, and their suppressive effects on diversity have the potential to sabotage growing international efforts to manage Long COVID effectively. Several groups and populations have also been disproportionately affected by the COVID-19 pandemic. They may be considered at risk from a medical perspective and/or from the perspective of their opportunities to function and participate in the community. [26]. From an equity perspective, the over‐representation of chronic conditions among disadvantaged (and often racialised) populations (e.g., Indigenous Australians) [27] increases the risk of both acute COVID-19 severity and long COVID. The infection risk for severe acute respiratory syndrome coronavirus 2 (SARS‐CoV‐2) is associated with age, immune status, and certain pre‐existing non‐communicable diseases such as obesity, asthma etc. One of the few predictive models available for long COVID has found associations with age, body mass index, female sex and the number of symptoms experienced within the first seven days of infection [28]. Each of these factors is already profoundly driven by the social determinants of health and health inequity.
“The pandemic will be with us for a long time; we need to engage with its inequities” [29]
Extant literature on the distribution and inequitable nature of the pandemic has mostly focused on infections, case numbers and vaccination rates. But scholars and commentators have increasingly identified and advocated critical fault lines in “glocal” (where global and local meet) society [30][31]. The recognition of “living with COVID‐19” in a “new normal” only peripherally acknowledges continuing patterns of inequity and vulnerability, both in terms of acquiring infection as well as maintaining immunity (either through vaccination or recovery). These patterns produce a sustained but inequitable distributed wave of post‐COVID‐19 social and health impacts; in short, the disadvantaged continue to suffer more and longer.
The enduring effects of long COVID in groups that already experience disadvantage and inequality will also make livelihoods more perilous. The detrimental health effects of what is called the “precariat” — “gig economy” workers (ride‐share drivers, food delivery riders, workers in precarious jobs, hosts of short-term rentals etc.), who are led to believe that they will achieve greater choice and more freedom in their livelihoods at the cost of appropriate social protections such as insurance, unemployment security, and old‐age investment — have been identified [32]. The disadvantage stemming from these failures in the current (absence of the) social contract is only exacerbated by compounding barriers to living one’s life to the full. It may contribute to longer-term destabilising and incapacitating social, economic and health consequences in future stages of life with COVID-19. For a social justice‐driven recovery in a post‐COVID‐19 era, it is imperative that two things are taken on board by health professionals and other caregivers at all levels and across all jurisdictions:
“It ain’t over for some until it’s over for all.” Building back better must embrace the full spectrum of disease emergence, spread, control, follow‐up, and healthcare delivery in every stage of prevention, management and investment in care, explicitly including Long COVID.
Planning for this must involve not just rhetorical allusions to priority populations without meaningful operational action. Critical intersectionality creates pockets of deep and irreconcilable injustice and health inequity if public and non‐government organisations maintain a siloed mantra of priorities.
A number of things need to happen to achieve these aspirations. Definitions and descriptions of Long COVID employed by services must be co-created with lived experience experts to enable consistent and adequate clinical diagnosis, management and social responses. National and International Long COVID data must be disaggregated by equity indicators such as socioeconomic status, geography, and ethnicity to provide quality evidence to build action. The PROGRESS‐Plus protocol is a helpful tool to assemble and communicate the dimensions of disadvantage that must be addressed [33]. Health professionals and other caregivers must also engage and collaborate with equity‐seeking populations and communities most affected to understand lived realities and potential solutions. Developing policy responses to Long COVID is also a key aspect of an effective health and social response [34], and could extend beyond the health sector to encompass structural inequities, such as housing availability and affordability, lack of adequate social protection, and marginalisation. And finally, dealing with the fall‐out of the pandemic on all fronts will require a tangible commitment to deliver across sectors and for everyone.
Learning Activity (30 mins)
Read the persona of Gayle Smith. Her experience of Long COVID features aspects of intersectionality – interconnected and interdependent aspects of her identity which create overlapping and potentially compounding systems of discrimination or disadvantage. The PROGRESS-Plus Framework lists a range of characteristics that may have an impact on health, well-being or outcomes.
Use a copy of the table below (Downloadable Table Template) to identify the aspects of Gayle’s identity and circumstances which might influence her lived experience of Long COVID. Discuss and note down the effects they may have, both positive and/or negative.
Characteristic / Circumstance
Gayle Smith
Potential Positive Effects
Potential Negative Effects
Place of residence (rural/urban, country/state, housing characteristics)
Education (Years in education/ level attained / School type)
Social Capital (Neighborhood / community / family support)
Socio-Economic Position (Income, benefits/welfare)
Age group
Disability (physical, cognitive or emotional disability)
Sexual orientation (Heterosexual, gay, lesbian, bisexual, other)
Other vulnerabilities (School non-attenders, contact with the criminal justice system, experiences of abuse or trauma, etc.).
Reflect on her characteristics and circumstances as a whole. Which would be most relevant to your work with Gayle, and how would you acknowledge or address them in your work with her?
Conclusion.
“In the making of Long COVID, conventional hierarchies of evidence and normative routes for scientific dissemination were frequently disrupted” [35]The content of this chapter sets the tone and provides some context for the rest of this textbook, which takes an explicitly patient-centred perspective. Equal value and presence are given throughout this resource to professional and patient knowledge because we agree with Callard and Perego[36] that “conventional health actors should include these contributions within formal scientific practices.” Our stance reflects the strong commitment of the editorial team to inclusion and equity for everyone in our community.
Developing an understanding of the broader context of the pandemic, disability, and disadvantage provides an essential foundation for health professionals and other caregivers. The challenges associated with managing Long COVID extend far beyond the health needs of individual patients, and their lived experience is inextricably entwined with a huge range of environmental factors and social determinants. Significant equity issues are associated with Long COVID, and this chapter has barely scratched the surface. These issues and effective ways to promote justice and equity will be explored in more detail later in this textbook.
For More Information
The following links will provide you with additional general information about Long COVID from creditable sources. The listings are not exhaustive, and you are encouraged to seek out locally relevant information for your community.
The broader context of patient activism around Long COVID
Lincoln, M. (2021). Necrosecurity, Immunosupremacy, and Survivorship in the Political Imagination of COVID-19. Open Anthropological Research, 1(1), 46-59. https://doi.org/10.1515/opan-2020-0104
Lived experience stories from people with Long COVID
https://www.c19recoveryawareness.com/
https://www.longcovidsos.org/film
Please consider providing us with some feedback via the following satisfaction survey to help us ensure this textbook meets the needs of all readers: Brief Feedback Survey – Introduction Chapter. If you have any additional feedback, suggestions or recommendations for improvement to this chapter, please email the editors at covidtextbook@deakin.edu.au.
References
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Callard, F., & Perego, E. (2021). How and why patients made Long COVID. Social science & medicine, 268, 113426. ↵
definition
The severity or harmfulness of a disease
The physical, social and attitudinal environments in which people live and conduct their lives. (ICF, WHO)
Non health factors that influence health outcomes (both positively and negatively).
