Exploring invisibility and epistemic injustice in Long Covid—A citizen science qualitative analysis of patient stories from an online Covid community

Abstract Background In 2020, the long‐lasting effects of the Covid‐19 virus were not included in public messages of risks to public health. Long Covid emerged as a novel and enigmatic illness with a serious and life‐changing impact. Long Covid is poorly explained by objective medical tests, leading to widespread disbelief and stigma associated with the condition. The aim of this organic research is to explore the physical and epistemic challenges of living with Long Covid. Methods Unlike any previous pandemic in history, online Covid communities and ‘citizen science’ have played a leading role in advancing our understanding of Long Covid. As patient‐led research of this grassroots Covid community, a team approach to thematic analysis was undertaken of 66 patient stories submitted online to covid19‐recovery.org at the beginning of the Covid‐19 pandemic between April and September 2020. Results The overriding theme of the analysis highlights the complexities and challenges of living with Long Covid. Our distinct themes were identified: the life‐changing impact of the condition, the importance of validation and how, for many, seeking alternatives was felt to be their only option. Conclusions Long Covid does not easily fit into the dominant evidence‐based practice and the biomedical model of health, which rely on objective indicators of the disease process. Patient testimonies are vital to understanding and treating Long Covid, yet patients are frequently disbelieved, and their testimonies are not taken seriously leading to stigma and epistemic injustice, which introduces a lack of trust into the therapeutic relationship. Patient Contribution The research was undertaken in partnership with our consumer representative(s) and all findings and subsequent recommendations have been coproduced.


| BACKGROUND
As of March 2022, there have been more than 483 million cases of Covid-19, and over 6 million deaths worldwide. 1 The frightening speed at which Covid-19 took hold in 2019/2020 called for immediate action to minimize infections and deaths, yet an acute disaster response, as seen in the United Kingdom (UK), inadvertently created 'Covid's paradox'. 2 Despite there being numerous examples of the devastating long-lasting effects of other viruses, including Covid-19's predecessor severe acute respiratory syndrome, 3 the notion of Long Covid was initially entirely dismissed and not counted. 4,5 Changes introduced to the UK's healthcare systems to respond to Covid-19 paradoxically made the system less fit for the purpose of managing what has been called a 'mass disabling event' in the emergence of Long Covid. 6 Long Covid is a patient made term used to describe symptoms that persist beyond the initial illness. 7 The National Institute for Health and Care Excellence (NICE) defines Long Covid as the symptoms that continue or develop after acute Covid-19 infection and which cannot be explained by an alternative diagnosis. 8 The UK's Office for National Statistics shows that the estimated number of people with self-reported Long Covid is steadily rising and currently stands at 1.5 million living with the condition in the UK in January 2022. 9 The symptoms of Long Covid commonly include fatigue, breathlessness, chest pain, postexertional malaise, autonomic nervous system disruption and cognitive dysfunction among others and can cause episodic, hidden disability as Long Covid symptoms are poorly explained by objective medical tests. 10 Within an era of evidence-based practice Long Covid has been doubly challenging, for healthcare professionals (HCPs) working in a strained system who feel disempowered to provide answers, and for patients who feel invisible and are vulnerable to stigma and epistemic injustice. 11 Epistemic injustice occurs when patients experience an unjustified discrediting as unreliable informants of their own illness experiences. 12 This study is unique, in that it is the first citizen science qualitative study in the UK where all the data has originated from, and the analysis is driven by members of an online grassroots Covid-19 community. Citizen science-the active and voluntary participation of the public in research has been invaluable in the pandemic, with studies such as the smartphone Zoe COVID Symptom Study app. 13 The Covid Recovery (https://covid19-recovery.org/) website went live in April 2020 and was the first public-facing website in the UK where patients could share their own unprompted stories of Covid-19. As Long Covid was characterized online, 5 this study gives a unique insight into the lived experience of Long Covid through the lens of an online grassroots Covid-19 community, without any recruitment to a formal research study. The aim of this study was to provide a coproduced analysis of patient stories submitted to the Covid Recovery Collective, 5 to further explore not only the physical nature of the condition but the epistemic challenges of the lived experience of Long Covid.

| MATERIALS AND METHODS
A qualitative approach underpinned by phenomenology was adopted to enable the researchers to describe and understand the participants' health-illness experiences during the early stages of the Covid-19 pandemic. 14   The project team collectively recognized the value of involving individuals with different professional and Covid-19 backgrounds in the process of coanalysis and coproduction to generate findings that provided 'real life' meaning. 15 Thematic analysis using the methods outlined by Braun and Clarke 16 was undertaken by four project team members (B. G., J. I., E. R., A. T.), coalesced with full project team meetings with G. J. (Table 1). A three-stage process of analysis was employed by the project team to ensure the method taken by each member was structured, methodical, ethical and rigorous [17][18][19][20][21][22] (Figure 1). Table 2 and Figure 2 present the method and the processes embedded into the analysis and the presentation of the themes. The method and processes establish and exhibit research trustworthiness, 23 by providing objectivity, dependability and transferability. 18

| RESULTS
The overarching theme emerging from the analysis of the participants' stories depicts the challenges and complexities associated with the diagnosis and management of Long Covid before it was officially recognized. Three key themes emerged during the thematic analysis (1) Life changing (2) Validation and (3) Seeking alternatives (Figure 3).

| Life changing
This theme reflects the sudden and significant physical impact of Long Covid on those with a confirmed or suspected diagnosis. This theme had three embedded subthemes: (i) end of normality, (ii) rollercoaster symptoms and (iii) uncertainty and fear within a broader mental health impact.

| End of normality
At the start of the pandemic, it was generally thought that a 'mild' Covid-19 infection would only last 2 weeks. The narratives portray a different story, highlighting the severity of 'milder' nonhospitalized cases for young and healthy people, with previously fit and active lifestyles.
Other than the mild asthma I was in great health before   . Thirty-three stories were allocated to each subteam for analysis.

Individual
Each individual conducted a line-by-line review of their allocated 33 stories.
Each subteam collaborated on a single Quirkos workspace.
Any relevant text was highlighted, and a 'Quirk' code was created on the workspace based on the content of the text.
Texts perceived to be related to the same theme were added to existing Quirk categories.
New Quirk codes were created when appropriate.
Process was repeated a further three times to ensure data saturation of each story. 19 For emergent themes, codes were organized into loose clusters for discussions within each analysis subteam.

Analysis subpairs
Codes and emergent themes of the 33 stories were discussed in the collective subteams.
Duplications were merged/removed, and a consensus of meaning was generated across each subteam.

Project team
Collaboration was on a single Quirkos workspace. The two workspaces were merged enabling the team to collectively discuss the codes generated by each subteam.
A table of themes and a thematic map presented the key themes and subthemes enhancing the team's conceptual understanding of the data through visual organization 14 and illustrated when data saturation had been reached with the development of no new themes. 19 The data codes and thematic map were collectively reviewed and discussed to establish coproduced themes.
During coding, emergent Quirk categories were labelled with the language used by the participants. At this stage, the categories were relabelled where appropriate using inclusive language, to incorporate distinctions in the data. 12 A system of indexing was established, visually reviewing the categories to establish similarities, contrary and interconnectivity.
The 'drag and drop' function of Quirkos was used to merge similar categories when duplicates were identified and designate categories as a 'parent' when subthemes emerged.
Quotes assigned to each code were examined to ensure they were representative of the theme. Themes were removed or reassigned where appropriate.
Discussion supported by the participant quotes ensured all decisions were based on a mutual agreement and reflective of the data.
T A B L E 2 (Continued)

Format Process
The table of themes and thematic map were updated to reflect the iterative changes arising from the group analysis.
Showing objectivity and dependability. 18

Theme finalization and representation
The four project team members (E. R., A. T., B. G., J. I.) plus G. J.
The development and agreement of the final themes were an iterative process occurring through a series of team meetings with all members of the project.
The table of themes and thematic map were updated at each stage of discussion until the final themes and subthemes were agreed upon. All emergent themes and subthemes were supported by direct participant quotes.
Showing transferability. 18 F I G U R E 2 Process of data analysis.
I long for this to all go away, [I] am desperate to resume normal life again. Bringing me back to health that I knew before January, now appears a long and difficult road.

| Rollercoaster symptoms
The symptoms experienced by the participants were described as a 'rollercoaster', swinging between periods of good health and relapse.
The rollercoaster of symptoms has been amazing in these 24 weeks, one week I would have fevers, the next week cough, the next week gastrointestinal symptoms, the other diarrhoea, the next brain fog, the next dry eyes, the

| Seeking alternatives
The final theme reflects participants' desires to seek alternatives to formal healthcare during their illness and includes the subthemes: (i) online support groups, (ii) self-help and (iii) exercise. Why was it the doctors and hospital were still not aware of these when I was able to find out the information on-line? Why would no one see me but only talk over the phone, why was I sending them the information and links from the internet before they listened to me!?.

Participant 21
The thing seemed endless. My GP was good at treating symptoms and was the first person to tell me that 'covid

| Comparison with existing literature
This study is part of a small but important group of studies that have documented the lived experience of Long Covid in the UK. 2,10,24-27 As we are not the first group to publish our results, we have the benefit of being able to place our findings in the context of previous literature to build an overall picture from multiple perspectives. Findings from this, explicitly community-sourced data, show very similar findings to those from researcher-led studies, adding to the validity of the body of evidence.
Overall, this body of evidence highlights the two areas in which Long Covid is particularly challenging to live with. Firstly, is that regardless of the severity of an initial Covid infection, recovery is not always straightforward as government advice initially outlined, and instead for those who develop Long Covid it is a serious, uncertain and confusing illness with a life-changing physical impact.
The experience of the illness is chaotic, episodic and ongoing, and individuals are prevented from returning to their previous healthy selves, causing a significant biographical disruption. 24,26 Secondly, Long Covid has characteristics of a hidden or invisible illness, which causes stigma, shame and epistemic injustice. Long Covid is 'hard, heavy work' 24 29 As patient representatives, we would argue for more epistemic humility from healthcare providers, as an approach that calls for partnership and dialogue to underpin the trust that is essential for a therapeutic relationship. 31 Beyond the scope of this paper, we would also argue for significantly advancing our ability to articulate the marginalization of patients as knowers, through more discussion and reflection of epistemic injustice in research, education and clinical practice. This discussion must also reflect and explore already existing inequalities in society to ensure they are not further exacerbated in dealing with an invisible illness.