Introduction
The COVID-19 pandemic had a disruptive effect on society and has been described as ‘one of those critical events that will shape history’ (Bosi and Lavizzari 2023, 89). For disabled people, the pandemic often meant greater health risks while not always being included in health policy and planning (Scully 2020; WHO 2020). In this paper, however, we focus on a group of people who became disabled during the pandemic as a result of contracting COVID-19. Beyond the millions of deaths, numerous patients experienced debilitating symptoms following the acute phase, commonly referred to as Long COVID (LC). While individuals with LC attracted attention, their experiences were often met with skepticism (Macpherson et al. 2022). Questions arose in the public debate regarding the legitimacy of their symptoms: were they really ‘worthy’, i.e., genuine, or were many simply struggling to ‘cope with life’?1 Individuals with LC also recognized a disparity between their personal experiences, the official guidance, and the public’s perception of the illness, affecting their mental and emotional state (Macpherson et al. 2022).
In response to these challenges, numerous associations advocating for LC patients’ rights were established across Europe (see LCE, Long COVID Europe 2024). These organizations helped to affirm patient experiences and offered reassurance that they were not alone in their struggles (Macpherson et al. 2022). The Swedish COVID Association (SCA) was established in July 2020 by individuals with LC with the aim to influence the societal narrative surrounding LC and advocate for the recognition of LC patients as deserving of healthcare: ‘Long COVID must be included in the narrative about the pandemic’ (Annual Report 2020, 4; Annual Report 2021, 4 see Table 1).
Table 1
Overview of data.
| TYPE OF DATA | N | DESCRIPTION |
|---|---|---|
| Consultation responses | 5 |
|
| Electoral guides | 2 |
|
| Internal documents | 6 |
|
| Interviews | 3 | Sara, Anna, and Maria: Former SCA representatives (pseudonyms). |
| Opinion pieces | 18 | Chronologically numbered 1–18. (Published in eight major newspapers.) |
| Reports | 4 |
|
| Website | 1 | http://www.covidforeningen.se/ |
SCA shares the overarching goal of advocating for marginalized groups with other disability and patient organizations. However, its concentrated efforts on ‘changing the narrative’ and implementing specific LC health care interventions, along with its exclusive online presence, set it apart within the Swedish disability and patients’ rights landscape, where social activities and peer support are typically central (Krantz and Melander 2024). Furthermore, the SCA is not a member of the main umbrella organization, the Disability Rights Federation Sweden, which comprises both patient and disability organizations, and does not use the term ‘disability rights’ in their communications. In other words, while its members, i.e., LC patients, have impairments and face disabling conditions, the organization does not seem to connect to a politicized disability identity as it is traditionally conceptualized (see e.g., Charlton 1998). One reason for this lack of connection to a broader struggle for disability rights may be found in the stigmatized identity of the disabled person (Grue 2014a; Tarvainen 2019). By connecting to a medicalized identity as ‘patient’ rather than ‘disabled’, an organization may exert less stigmatization, i.e., be perceived as more legitimate, in a society where the medical domain still holds prominence (Grue 2016).
Indeed, the patient rights movement has expanded and gained significant influence over the past decade, aligning well with the individualized consumerist logic prevalent in many societies, where person-centered care has become increasingly popular (Mankell 2021). This topic frequently arises within the Disability Rights Federation Sweden, where there are differing opinions on how to frame advocacy between traditional disability rights organizations and more healthcare-oriented patient organizations (Bahner 2022). In other words, making clear-cut distinctions between ‘illness’ and ‘disability’ is challenging, both theoretically and in advocacy practices (Garden 2010; Grue 2014a; Grue 2016).
The debate on worthy patients and legitimate illnesses is neither new nor unique; for centuries, healthcare has been allocated based on assumed moral worthiness of individuals and populations (Garden 2010; Hoffman 2012). According to Fraser (1993, 9), the ‘political imaginary’ of welfare is based on the construction of social identities and assumptions about their moral worth, i.e., policy formation is closely connected to ideas about who is a deserving recipient. As disability studies scholar Jan Grue (2014b) has shown in his Norwegian study of discourses around the controversial diagnoses chronic fatigue syndrome and myalgic encephalomyelitis (CFS/ME), the virtual community of CFS/ME patients has forcefully and successfully influenced both media narratives and implementation of medical treatments. At the same time, this has been achieved at the expense of a disability identity rooted in structural disadvantage; rather, it serves to reinforce a medical and individualized model of disability (Grue 2014a), which holds discursive authority in narratives about illness and disability (Garden 2010).
From a critical disability studies perspective, this issue is problematic in several ways, considering the consequences of neoliberal political shifts in how society (de)values people that depart from bodily, cognitive, and psychiatric norms (Goodley et al. 2019). In this study, we see disability as a concept that signifies not only an individual experience but also a social, cultural, and political one (Meekosha and Shuttleworth 2009). By examining how norms around ability, productivity, and normality are produced and reproduced at various levels, we can illuminate how individuals, organizations, culture, and welfare states are intertwined with structural hierarchies and mechanisms of inclusion/exclusion within a system of ableism (Goodley et al. 2019).
By employing a critical disability studies approach that integrates material and discursive aspects of social life (Goodley et al. 2019), we aim to analyze how the narratives of the SCA can be understood in relation to dis/ability on the discursive level and the material consequences this might have for the disability rights movement at large. We draw inspiration from Geiss and Egner’s (2022) analysis of organizations’ multi-dimensional meaning production through intersecting narratives on individual, social, and societal levels. Specifically, we ask: How do organizational narratives construct LC patients as a morally and medically deserving group in Swedish society? How do organizational narratives reflect, reinforce, and/or disrupt cultural values and beliefs regarding dis/ability? What are the potential consequences of these narrative constructions for the disability rights movement? By using the term ‘dis/ability’, we aim to analyze disability and ability as always interdependent phenomena: ‘To know something about disability one needs to have a sense of its often hidden referent (ability)’ (Goodley et al. 2019, 986). We argue that to understand how and why the SCA narrates in certain ways about LC, it is essential to comprehend the underlying and taken-for-granted notions of dis/ability in Swedish society, particularly in relation to the state’s response to the pandemic, the general institutional structure of healthcare, and the system for civil society organizations’ deliberations with the authorities.
Policy narratives, i.e., a collection of interconnected narratives intended to influence opinions, are increasingly acknowledged as having a significant role in forming public policy (see e.g., Jones and McBeth 2010). Patient organization narratives are largely centered on the collection of individual ‘illness narratives’, which, according to Kleinman (1988, 49), are stories to give ‘coherence to the distinctive events and long-term course of suffering’. Suffering is fundamentally a holistic process that engages the entire person, necessitating ‘a rejection of the historical dualism between mind and body’ (Frank 2013, 169). This perspective aligns closely with the Critical Disability Studies’ (CDS) focus on disability as an interdependent phenomenon, where the boundaries between health and illness, as well as between illness and disability, become indistinct. Emphasis is placed instead on personal experience; in this context, narratives function as tools for individuals to construct their own stories and interpret those of others (Smith and Monforte 2020; Tarvainen 2019). Furthermore, narratives serve to affirm subjective experiences, assert agency, and contest dominant healthcare strategies, thereby operating as political forces (Sakalys 2000).
In the following section, we present our methods, materials, and analytical tools for studying the SCA’s narrative strategy.
Methodology
Our analysis of the SCA comprises data gathered from several sources (see Table 1). Included are all available texts on the SCA website from autumn 2020 to spring 2024, with pages such as ‘About the association’, ‘Issues that we advocate’, ‘This is how we work’, ‘Research and knowledge’, ‘Get involved’, etcetera, as well as statutes, annual reports, investigative reports, opinion pieces, and consultation responses. These texts represent materials that the SCA has deliberately chosen to make public, and an analysis of unpublished or internal documents might have provided an alternative perspective. Texts were predominantly Swedish, and quotations were translated by the authors.
The aforementioned data was complemented with semi-structured interviews with three individuals who were engaged in the SCA during the pandemic, i.e., the time period in focus of our analysis. Selected for their official roles, such as board membership, they provided verbal informed consent after being briefed about the study and ethical procedures. Insights from the interviews were used to triangulate information from published materials. The interviews utilized open-ended questions about the history of the SCA: the process of going from a Facebook community to a formal organization and how the SCA formulated policy goals and advocacy strategies. Interview data included for this article concerns organizational issues and processes relating to narrative strategies of the SCA. To safeguard the interviewees’ identities, pseudonyms were used, and potentially revealing information was modified or omitted.2
We are using all of the collected data, irrespective of type, as together making up the totality of SCA’s narrative.
To organize our analysis, we have used the Narrative Policy Framework (NPF). NPF is dedicated to the empirical study of narratives in policy processes based on the theoretical assumption that human decisions do not necessarily rest in rationality but in emotions, beliefs, and political identity (Shanahan, Jones and McBeth 2018). Effecting societal change requires reshaping these emotions and beliefs. On a social level, a core assumption of the NPF is, accordingly, that social construction matters in public policy (Shanahan, Jones and McBeth 2018). Thus, studying public policy involves examining how individuals and groups construct their social realities.
Central to the NPF theory is that policy narratives operate at three levels. The micro level focuses on how individuals shape and are influenced by narratives (i.e., the individuals’ illness stories); the meso level focuses on how groups of actors and coalitions use narratives in a policy subsystem; and the macro level focuses on overarching narratives embedded in cultural and institutional contexts. The framework is dynamic; findings at one level may influence other levels (Shanahan, Jones and McBeth 2018). We believe a multi-level analysis is necessary to explore the relationship between individual illness narratives and the organization-based narrative as well as the effects of organization-based narratives at the societal level.
We have followed the NPF framework of generalizable structural elements: setting, characters, plot, and moral of the story (Crow and Jones 2018). The purpose of a setting is to focus the audience’s attention on the space where the story takes place over time and consists of features such as geography, laws, and other facets of the policy subsystem (Shanahan, Jones and McBeth 2018). Parts of the settings appear fixed (such as the Swedish authority structure); others are at the time highly contested (e.g., LC).
Characters are typically defined as victims (potentially harmed or threatened by a policy problem), villains (responsible for the policy implying harm or threat), and heroes (promise relief for the victim, the potential fixer of the policy issue) (Crow and Jones 2018). In a narrative, characters are the entities that drive the storyline by acting or being subject to actions. Characters can be individuals, organizations, or groups and operate in the public or private sphere. Characters can exhibit various strategies in relation to dominant narratives, e.g., internalizing or resisting oppressive narratives (Tarvainen and Kivistö 2023) or trying to reshape narratives about the group that they represent (Geiss and Egner 2022).
Plots are organizing devices that link characters via goals and relationships while situating the story and its occupants in time and space. The plot organizes actions, drawing attention to facets of the setting, and often highlights the moral of the story. According to Shaul Shenhav (2015, 32), a plot ‘keys in on the content of the story and what it is about’, i.e., a plot is more than a sequence of events.
The moral of the story is typically the policy solution of the narrative, normally culminating in a call to action, frequently cast as the action of the hero to protect a victim from harm (see also Geiss and Egner 2022). However, policy narratives do not always state policy solutions but rather offer intermediary steps (e.g., contact your elected representative) to the larger policy solution (e.g., change a law or regulation) or a reference to a policy (e.g., this policy idea is bad/good). As such, these intermediary steps illustrate the ongoing nature of NPF as segments on different levels of understanding (micro, meso, macro).
The material was thematized in accordance with NPF as setting, characters, plot, or moral of the story. Within these themes, we coded different aspects relating to the setting, characters, plots, and morals that we interpreted as being central to the SCA’s narrative. Our objective was to analyze the narrative as a whole, rather than creating singular classifications of the content. Therefore, a specific statement might fall under more than one category. The narrative was analyzed through the lens of the SCA, meaning our analysis neither evaluates its accuracy nor its inaccuracy. Rather, our focus lies on the utilization and functions of the narrative, operating on the assumption that narratives extend beyond merely reflecting or recounting experiences; they actively influence and shape people’s lives in significant ways (Smith and Monforte 2020).
Results
Our analysis of the SCA’s narrative starts in the spring of 2020, when it became evident that some individuals, not necessarily those who had been severely ill or required hospitalization due to the virus, were experiencing long-term effects. According to the SCA’s annual reports, the organization’s explicit goal is to alter the policy narrative around LC. In the following, we present the results thematized under the components of setting, characters, plots, and the moral of the story at the micro, meso, and macro levels.
Setting: The Swedish take on the COVID-19 pandemic
Understanding the setting, defined as the space where actions unfold over time, is crucial for comprehending a narrative (Shanahan, Jones and McBeth 2018). A setting can be described in various ways; in this context, it reflects the SCA’s portrayal of the temporal and spatial environment. July 16, 2020, marks the starting point. On this date, merely six months after the virus was first identified, the government tasked the Swedish Agency for Health Technology Assessment and Assessment of Social Services (SBU) with evaluating the scientific evidence regarding the care of patients with long-term COVID-19. According to the SCA report Too little and too slow (2021), this was not an adequate response, and this is further elaborated in another report:
Authorities and politicians have not taken any concrete measures to identify the group and their symptoms. Due to low testing capacity and shortcomings in the guidelines regarding diagnosis, it is very difficult to estimate the number of LC patients based on diagnostic codes. The National Board of Health and Welfare has gone so far as to emphasize that it is impossible because the patient group is not uniform, and the Public Health Agency has clarified that they do not collect any data on long-term complications. (SCA report, Long-term illness in COVID-19 2020)
From the outset, the SCA challenged the government’s and state agencies’ narrative regarding COVID-19, particularly their (lack of) response to LC. In their view, due to low testing capacity and the resulting inadequate statistics on individuals with LC, this governmental narrative on a policy level had significant material consequences on the individual level.
The increasing number of individuals with LC comprised people of all ages. In October 2020, the SCA states, ‘It is a large group of individuals—previously healthy, young, employed, parents, and children—among whom most were classified as mildly ill because they did not require hospitalization’ (Opinion piece no. 4). Initial symptoms could be mild, which posed a problem as individuals remained unnoticed by both the healthcare system and society at large. The SCA members describe their search for adequate care while simultaneously struggling to find information about their condition. In this setting, the individuals were suffering due to inadequate policy responses.
LC was a novel syndrome without pre-existing patient associations. However, individuals turned to the internet, including Facebook, and online groups emerged. When individuals with LC attempted to contact authorities seeking information, it was challenging to gain access without a formalized association. Through open Facebook pages, individuals found each other and formed private groups, communicating through informal channels. Between March and May 2020, they decided to establish an organization to showcase the number of individuals experiencing LC symptoms. Marketing initially focused on Facebook. Anna recalls, ‘In the first 24 hours after announcing the establishment of the organization, I think we gained about 2000 members, and it was like, Wow, Holy Cow!’. The setting of the Swedish corporatist tradition, which formalizes deliberations between authorities and civil society, can be considered an important prerequisite for the decision to form a patient association (see e.g., Mankell 2021).
However, what sets the SCA apart from the rest of the Swedish patient rights movement is that they operate entirely online. The availability of digital communication channels enabled members to organize and participate effectively, despite severe illness. Sara reflects:
From what I have observed of the Swedish patient movement in general, I don’t think their members joined the organization while being so severely ill… We [the SCA] literally formed amidst acute ambulance transports to the hospital… We were very ill, but also highly motivated. (Interview, Sara)
Due to societal constraints and, more significantly, physical limitations, only a small number of the original SCA members were able to attend in-person meetings. Consequently, the SCA was initially established as a national organization, unlike traditional patient and disability organizations traditionally tied to specific geographic locations, and with a structure of local, regional, and national entities (Sépulchre and Lindberg 2020). But with official recommendations to restrict travel, physical meetings became impractical. Being an online-only organization, online meetings and communications became the norm, even though some issues existed, as Maria notes, ‘There has likely been a gradual filtering out [of individuals who are not able to use digital tools], and as an organization, we are aware of that’. Despite this awareness, there were no specific strategies to work against the ‘filtering out’ of certain patient groups.
One reason was that the SCA was rapidly established, and the founders emphasize that speed was crucial. There was a sense of urgency that action was needed immediately. Collaborations were established with researchers critical of the Swedish strategy and/or speaking up about LC. The SCA did not actively recruit members but trusted that information about their advocacy was sufficient.
To summarize the setting, the SCA was rapidly formed by individuals who had met online. Advocacy efforts were the sole focus, thereby notably diverging from activities of the broader disability movement. The initial focus of the SCA was to (re)shape the societal discourse surrounding COVID-19/LC. This strategic decision is evident across their annual reports from 2020 to 2023.
Characters: One-eyed authorities and deserving patients
In our analysis of the SCA’s narrative, several key characters emerge: the healthcare system, researchers, media, individual LC patients, and the SCA itself. The conzeptualization of these diverse institutions and organizations as ‘characters’ arises from the SCA’s consistent depiction of them. One of the most significant characters, however, is the Public Health Agency, which faced immense pressure, delivering daily press briefings on mortality rates and hospital admissions from the preceding 24 hours. Maria articulates:
Individuals like us, who were grappling with the long-term effects of COVID-19, were overlooked… As we communicated with one another and with researchers from the confines of our homes, we recognized a pattern – we were not merely a handful of individuals but a sizable cohort. Our collective action can be seen as a response to our exclusion from the official narrative of the pandemic. (Interview, Maria)
Against this backdrop, the SCA’s narrative cannot be understood in isolation. It served as a counter-narrative, contrasting the almost institutional daily press conferences with the state epidemiologist. According to Sara, ‘trust in state authorities was elevated to a virtue’. The SCA members accordingly perceived themselves as outsiders and in opposition to ‘the villain’, the Public Health Agency, compelled to confront the authorities about the shortcomings of the Swedish strategy.
Another character was undoubtedly the healthcare system. The working conditions were extremely strained, and the Public Health Agency as well as the media lauded everyone within the healthcare system for their efforts, almost as heroes. However, according to the SCA narrative, the healthcare system exacerbated the situation for individuals with LC with a kind of Catch-22 regulation that dictated that individuals with fever and cough (i.e., typical COVID-19 symptoms) were to be excluded from primary healthcare facilities. Thus, patients experienced distrust from the broader healthcare system, which was reciprocated as individuals with LC developed similar distrust toward the thatsystem. According to the SCA, the primary issue was that the healthcare system failed to incorporate new and updated knowledge during the pandemic. Representatives of the SCA even posed the rhetorical question, ‘Don’t Swedish citizens have the right to official information about the actual consequences of the virus?’ (Opinion piece no. 6).
The SCA thus took on the role of a hero speaking out against an inadequate system where citizens were not granted their rights to good care and asserted that a crucial aspect of their activities was to create opportunities for patients’ voices to be heard. One strategy has been to pursue close collaboration actively with relevant medical researchers. According to the SCA’s narrative, the SCA both initiated research and served as an inspiration for researchers in their work. Essentially, the SCA strategically supported research, and the results thereof are depicted as crucial to individuals with LC:
There are currently no tests available to definitively diagnose or rule out LC, primarily due to the insufficient amount of research conducted this far. Without adequate research, it is impossible to identify specific markers or determine which diagnostic tests and procedures are necessary. (Opinion piece no. 3)
In other words, the SCA created a series of collaborations where certain researchers were viewed as heroes. By developing a network of researchers, the narrative about LC patients’ rights could be strengthened: it was not only based on patients’ individual experiences but corroborated by scientists on an aggregated level.
Another character is the media. The pandemic had a profound impact on society with extensive, sometimes overwhelming, media coverage. According to the SCA, attention has been largely positive but also left LC patients exposed and questioned, as Maria explains:
Media coverage shapes public awareness. We’ve also seen an increase in membership, including individuals who didn’t fall ill during the first wave but during subsequent waves. Some of them had previously read articles portraying the SCA members as hypochondriacs or irrational women, and they feel betrayed.
This sentiment is linked to the narrative surrounding what authorities know or don’t know; ‘They feel deceived when they haven’t been informed about LC and then fall ill themselves’. (Interview, Maria)
At the heart of the SCA’s narrative regarding LC patients is the belief that they are citizens entitled to care, which enhances their depiction as victims who turn into heroes striving for their rights against the media (the villains) who fail to acknowledge them. The narrative of the LC patient as a hero also builds on notions of having previously been ‘good citizens’. ‘Before COVID, I was a typical high-energy person. I went to the gym four days a week, focused on weight training, and I was on track to be in the best shape of my life before turning 40’ (Interview, Anna). Anna’s description stands in sharp contrast to the primary risk groups described by the Public Health Agency: elderly, chronically ill, or overweight individuals. The narrative presented in the SCA reports indicates that LC mainly impacts individuals during their prime years—those who are generally healthy, physically fit, possess successful careers, and have a higher education. The SCA’s website has a section entitled ‘Voices of the Affected’ where individuals reveal that before contracting LC, they were, for example, competing in triathlons, working full-time in leadership positions, or excelling in education. Despite LC and needing to slow down, work remains a priority, thus underscoring their societal contributions. In essence, exemplary citizens, therefore, have a perceived ‘right’ to fall ill and deserve to receive social assistance. They are heroes fighting against LC and should not be hindered by authorities, the media, or the health care system in their struggles.
These narratives adhere to a recognizable pattern: individuals who were flourishing in their daily lives—accomplished and successful—find their lives upended by LC following COVID-19. One of the SCA’s strategies was to collect illness stories from members. The emerging narrative to be used in policy advocacy was built up around these individual stories and centered on accomplished, productive middle-class members of society, possibly in response to the personal attacks that some SCA representatives faced in media coverage. Some journalists even questioned the legitimacy of LC, naming it a ‘cultural disease’ or mass hysteria.3 The SCA vehemently rejected this notion:
For over 14 months, each experience has felt more absurd than the last—swollen tongue, fainting, a pulse of 164 after a slow walk, difficulty swallowing, abnormal thirst, spontaneous bruising, and exhaustion so extreme that even the simplest household tasks feel as daunting as scaling Mount Everest. Yet the most surreal aspect of all is the suggestion that LC should be seen as a fashionable diagnosis, a ‘trend’—as if someone would willingly choose it, like picking out a cardigan. (Opinion piece no. 9).
In sum, key characters include the Public Health Agency, the healthcare system, researchers, and media, as well as individual LC patients that make up the collective of patients in the SCA. Individuals with LC struggle for recognition as deserving of care but face challenges being labeled as ‘problem patients’ by healthcare. The SCA narrative underscores the authorities’ lack of attention to individuals with LC during the pandemic, causing feelings of exclusion and frustration, thus being villains. Despite the SCA’s efforts to raise awareness and collaborate with researchers, a significant knowledge gap remains, with patients facing skepticism and stigmatization in media.
Plot: Struggle and resistance
According to the SCA, the Swedish authorities, including the healthcare system, have misled individuals with LC. Combating the pandemic, the priority was to prevent fatalities, thus downgrading long-term issues such as LC. SCA concludes that knowledge about LC is ‘alarmingly low’ (SCA report Long-term illness in COVID-19 2020). One informant explains:
The challenge for us as a patient group is that our existence has been denied in order to prioritize certain political issues and demands. By this, I mean the existence of individuals who do not recover after COVID-19. And it’s not a small group; it comprises around 10%, a significant portion. What’s most tragic is that The Public Health Agency, which sets the narrative of the pandemic, does not include long-term effects of COVID-19 when considering public health. This means that individuals with long-term effects of COVID-19 are not considered part of the ‘public’ in ‘public health’. (Interview, Sara)
The SCA argues that authorities have focused on avoiding death not only due to lack of knowledge but also as an active choice: ‘The National Board of Health and Welfare has chosen to downplay these numbers’ (Opinion piece no. 5, our italics, these numbers refer to persons with LC).
According to the SCA, authorities were not doing enough when learning of LC. This had personal consequences, and those with LC risked not receiving healthcare, being ineligible for social insurance (Opinion piece no. 3), and receiving incorrect diagnoses (Opinion piece no. 8). Marginalization and psychologization of LC lead to incorrect medical care; patients were told they must learn to live with LC and accept their situation (e.g., Opinion piece no. 9). The SCA emphasized that LC comprises physical symptoms requiring diagnostic tests and procedures, not acceptance and coping. One informant expresses, ‘If someone had suggested going for a walk in the sun, that would not have had any damned effect at all.’ (Interview, Anna). In other words, the plot of the narrative describes a process where misrecognition and lack of knowledge on policy and organizational levels (state agencies, health care providers, media) lead to individual suffering.
A notable aspect of the formation of the SCA is the near simultaneous onset of illness among its members. None have experienced LC over extended periods (leaving a knowledge gap regarding progression and management), but the simultaneous onset gave a shared experience. Sara describes a unified ‘psychological journey’ marked by the uncertain prognosis. This suggests a commonality in needs, facilitating cohesion and solidarity within the group, leading to an emerging meso-narrative, and fostering a sense of unity and mutual support. This serves as a source of strength and empowerment but also evokes feelings of frustration and resentment:
Our shared experience fueled a sense of indignation. Many of us, occupying privileged positions in society, found ourselves encountering dysfunctional healthcare and social service systems, which only served to intensify our frustration. (Interview, Maria)
One frustration was that the pandemic nature of the illness exacerbated issues within the healthcare system and the sick leave infrastructure. In one of their consultation responses, the SCA underlined that the health insurance was not adapted to the situation, leaving patients without adequate certificates needed for insurance claims (REF). Encountering others in the same or similar situation empowers individuals involved in SCA to collectively direct their frustration toward a system that has failed them, producing a powerful narrative of shared struggles.
To summarize the plot, the SCA contends that authorities, including the healthcare system, neglected individuals with LC when prioritizing immediate concerns over long-term issues. Authorities exacerbated this negligence by not understanding, even deliberately downplaying, the impact of LC. The SCA argues that this disregard for scientific knowledge about LC leads to inadequate healthcare access and incorrect diagnoses. The narrative thus incorporates a deliberate questioning of official policy and medical knowledge while providing an alternative one from their own perspective. The collective experience among SCA members fostered unity and solidarity but also fueled frustration toward an ill-equipped healthcare system, highlighting perceived systemic failures during the pandemic. This shared experience of struggle of a significant group of people was used to strengthen the power of the narrative, almost like a David against Goliath story.
Moral of the story: We exist and deserve recognition
Central to the SCA’s narrative is the assertion that individuals with LC face dismissal, neglect, and marginalization. One SCA report is entitled As if we didn’t exist – A review of knowledge about LC and patients’ testimonies about healthcare (2021). The website highlights key advocacy points, or calls to action, including the imperative to ‘Count us! Without data, no good decisions’. The SCA’s business plan for 2021 states that the organization should advocate for authorities to acknowledge the magnitude of LC and ensure that people with LC receive recognition. For example, a partner of an individual with LC laments, ‘Before the pandemic, I believed in our welfare system’s ability to support us in times of need, but now I realize its exacerbating effects on the health of ill individuals’ (Opinion piece no. 15). Additionally, SCA asserts a notable dearth of research concerning non-hospitalized patients. The website section ‘Research and knowledge’ states, ‘Research concerning the substantial cohort of patients enduring persistent and profoundly disabling symptoms, irrespective of hospitalization, has been notably deficient’. An important component of the moral of the story is thus that the SCA inhibits an important role as whistleblowers in a society where most citizens are not aware of the inadequacies of the system.
Furthermore, central to the moral of the narrative is that individuals with LC are competent and resilient; hence, it is imperative to supply necessary support to facilitate their recovery. A policy solution to assist LC patients is therefore beneficial not only for the patients themselves but, according to this narrative, for society as a whole. Articulated in opinion piece number 13, ‘Supporting patients with LC is in the national interest, as tens of thousands of individuals are at risk of experiencing such a debilitating condition’. Individuals, described by SCA as previously high achieving, are unable to work, leading to adverse effects on society, mainly diminished productivity and a reduced tax base. This narrative ties into a moral framework of economics and distribution, portraying LC patients as an undervalued and overlooked potential. It draws on an ideology of responsibilization, suggesting that LC patients are eager to contribute but are not provided with the necessary prerequisites to do so.
In sum, the moral of the story is twofold. Firstly, it highlights the neglect and marginalization of LC patients with testimonies revealing a loss of faith in the welfare system and positioning the SCA as a whistleblower. Secondly, the narrative portrays LC patients as competent and resilient, even if they need support for recovery. Supporting them is seen as beneficial for society, as their inability to work affects productivity and the tax base.
Discussion
The unique Swedish response to the COVID-19 pandemic, characterized by minimal restrictions and high trust in individual responsibility (Ludvigsson 2023), forms the backdrop of the SCA’s narrative and underscores the interplay between individual experiences, organizational advocacy, and societal structures (i.e., at the micro, meso, and macro levels). By examining the setting, characters, plot, and moral of the story, we can see how these narrative elements interconnect across different levels of analysis. The setting highlights what the SCA frames as systemic gaps and the need for a more inclusive approach to public health. A key reason for the SCA’s narrative strategy can be traced to their construction and dissemination of alternative narratives based on the experiences of LC patients. By doing so, they challenge the dominant narrative propagated by the government and authorities (see also Tarvainen 2019). This approach contrasts with other forms of patient advocacy that align more closely with the prevailing narrative of the ‘worthy patient’ within the existing political framework (e.g., Mankell 2021).
The narrative features key characters such as the Public Health Agency, the healthcare system, researchers, media, and LC patients themselves. The SCA positions LC patients as deserving victims/heroes, supported by understanding and knowledgeable researchers, in contrast to the perceived villains—government authorities and media—that have neglected or misrepresented their plight. In this narrative, the SCA itself emerges as a primary hero. The analysis reveals that actors can be portrayed as being multiple characters simultaneously (most notably LC patients) and that a single characteristic (such as villain or hero) can be attributed to various actors. Although this strategy is prevalent among advocacy organizations, including those in the disability field (e.g., Geiss and Egner 2022), the unique context of the Swedish pandemic response, which differed significantly from most other countries, positioned the SCA uniquely. Their narrative directly challenged the otherwise unquestioned trust in the authorities.
The plot revolves around the struggle and resistance of LC patients against systemic neglect. The SCA’s efforts to reshape the narrative about LC patients highlight the tension between individual suffering and organizational advocacy. By collecting and amplifying individual illness narratives, the SCA creates a powerful collective voice to challenge the dominant policy discourse. This narrative strategy not only empowers individuals but also seeks to influence broader societal perceptions and policies. Central to the SCA’s narrative is the assertion that LC patients are competent and resilient, deserving of recognition and support. This moral framework ties into broader themes of economics and distribution, portraying LC patients as an undervalued potential. The SCA’s advocacy emphasizes the need for systemic change to provide the necessary support for LC patients on an individual level so that they can, yet again, become productive citizens. This aspect of the narrative diverges from other forms of patient advocacy, which primarily focus on the immediate wellbeing of patients and advocate for better treatment without necessarily aiming for a return to ‘able-bodiedness’ (e.g., Mankell 2021; Grue 2014b).
Although narratives are rooted in beliefs and emotions, the SCA case illustrates that a key aspect of constructing one is deciding which facts to emphasize. One may see the SCA’s strategic approach as a desire to combine facts with emotive elements, as it combines individual stories with a heavy emphasis on scientific expertise to create a coherent narrative. This illuminates the deep interconnection between knowledge and power (Meekosha and Shuttleworth 2009), and similar strategies are used by other patient associations (e.g., Chowaniec-Rylke 2019; Grue 2014b). The heavy emphasis on scientific knowledge also shows that the medical model of dis/ability is still influential in advocating for patients’ rights (Goodley et al. 2019).
Central to the narrative is the notion of the deserving or ‘worthy’ patient, presenting a dilemma for patient associations as they balance between demonstrating societal contribution and averting stigmatization. This dilemma prompts scrutiny regarding the treatment of ‘unworthy’ patients and reflects societal perceptions of worthiness (Higashi et al. 2013). In today’s materialistic society, autonomy is highly valued, and one’s worth is often measured by work productivity (Strandberg et al. 2002). Conversely, dependence can be considered a struggle for existence, as identity is tied to self-management and strength. In a context where individual stories hold significant weight, exposing oneself involves vulnerability; however, a shared meta-narrative can mitigate this vulnerability. Furthermore, while individual narratives may appear disjointed, collectively they provide a nuanced depiction of the multifaceted manifestations of a severe new illness (Rushforth et al. 2021), showing the interconnectedness of the individual, organizational, and societal levels of narrative formation.
However, by emphasizing LC patients’ worthiness—that is, by narrating tales of how competent, hardworking, and healthy this group previously was—they run the risk of solidifying the division between those who are deserving, i.e., healthy, fit, and diligent, and those who are not, i.e., ableist tropes that diminish the worth of ‘non-productive’ disabled people. The SCA’s argument is primarily based on the notion that LC patients should not be blamed for their illness, as they have lived healthy lives, worked diligently, and consistently sought to recover, contrasting the common discourse of overweight and smoking risk groups. While this perspective can be viewed as empowering, it ultimately excludes others, and the narrative may reinforce stigmatization. By doing so, the narrative illustrates how LC patients embody both disability and ability simultaneously. This duality highlights the complex nature of their experiences, where they navigate the challenges of long-term illness while also demonstrating resilience and competence. This perspective challenges traditional binary views of disability and ability, emphasizing the fluid and multifaceted nature of these concepts and demonstrating the usefulness of the concept of dis/ability (Goodley et al. 2019). Moreover, by emphasizing the transition from able-bodied to disabled and the numerous negative consequences of this shift, the SCA’s narrative reinforces a broader societal discourse of ableism, where the tragedy model of disability remains prevalent (see also Tarvainen 2019). Thus, the dominant ableist narratives propagated by the government and authorities compelled the SCA to adopt an ableist narrative as a strategy to be heard, understood, and gain influence in a society where productivity is a crucial measure of citizenship rights.
Conclusion
This analysis has demonstrated how the SCA leveraged counter-narratives to challenge the dominant governmental narrative that made LC patients invisible. By highlighting systemic gaps and advocating for a more inclusive public health approach, the SCA constructed a narrative that positioned LC patients as deserving victims and heroes, supported by researchers and opposed by government authorities and media. This approach illustrates the power of collective illness narratives in challenging dominant policy discourses. However, the emphasis on worthiness and productivity risks reinforcing ableist tropes and excluding those deemed ‘non-productive’. Ultimately, the SCA’s narrative highlights the complex interplay between individual experiences, organizational advocacy, and societal structures. It challenges traditional binary views of disability and ability, emphasizing the fluid and multifaceted nature of these concepts (Goodley et al. 2019). The SCA’s strategic use of narrative underscores the deep interconnection between knowledge and power, illustrating the ongoing influence of the medical model of disability (Meekosha and Shuttleworth 2009). This case study demonstrates the potential of narrative strategies to shape societal perceptions and policies. However, activists must navigate the complexities of challenging ableist narratives while advocating for change.
Notes
[1] For example the following editorials: https://www.dn.se/ledare/hanne-kjoller-samma-symtom-har-i-olika-tider-fatt-olika-namn-nu-talar-vi-om-postcovid/ or https://www.svd.se/a/gwLPb5/antligen-nyktrar-varden-till-om-postcovid.
Acknowledgements
We wish to thank our interview participants for their valuable contributions to this research. We also appreciate the input from our colleague Oskar Krantz, members of the Swedish network for critical disability studies, KritiFunk, and the Research Group for Civil Society, CSSA at the School of Social Work, Lund University. Additionally, we acknowledge the useful comments provided by the reviewers, which have helped improve this publication.
Competing Interests
The authors have no competing interests to declare.