[Book chapter] How Stigma Emerges and Mutates: The Case of Long COVID Stigma, 2025, Farrimond et al

[forestglip]

8: How Stigma Emerges and Mutates: The Case of Long COVID Stigma

Hannah Farrimond, Mike Michael

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Introduction
How do new stigmas emerge? How do they relate to existing stigma? Why are we seeing an emergent devaluation and discrimination of people who have long COVID, given how common it is to have experienced COVID-19? This chapter explores these questions using the ‘stigma mutation’ theory that I (HF) have proposed elsewhere (Farrimond, 2021).

Stigma mutation theory suggests that the emergence of stigma, and how stigma changes over time, can be understood along three dimensions: ‘lineage’ (how stigma is linked to other stigmas and histories of stigma); ‘variation’ (how stigma changes emerge in relation to differing environments and cultures); and ‘strength’ (how stigma can intensify or weaken over time). In this chapter, we propose an extension of this theory by suggesting that these dimensions are interrelated; stigmas constitute a dynamic ‘assemblage’ of connections which are both predictable (what we call ‘territorialised’) and unpredictable and disrupted (what we call ‘de-territorialised’).

In other words, there are multiple relations of connections gathering to form and reform stigmas. Some are expected, given what we know about the persistence of stigma, while others are unexpected, creating complex new effects.

To explore the usefulness of this theorisation, we explain how and why long COVID stigma (Pantelic et al, 2022) has come about. We suggest long COVID stigma shows clear continuity with existing stigmas related to chronic illness, gender, poverty, State dependence, and inactivity in neo-capitalist societies. Simultaneously, long COVID stigma is being de-territorialised (or disrupted) in a multiplicity of ways, for example, by activists and unpredictable events.

We also consider the symbolic value of any given stigma. For instance, long COVID stigma may be amplified in the face of a collective desire to forget COVID-19, yet stigma may also lessen via active resistance and/or cultural change.

Link | PDF (Chapter from Recalibrating Stigma) [Open Access]

 

[rvallee]

I'm only skimming because I don't have the concentration to commit to it, but it seems rather sensible and well-informed.

 

[NelliePledge]

Yes although in academic speak so not as clear as I would prefer skimmed and formed the same conclusion

 

[Sean]

Plain English should be compulsory in the first year of all undergraduate degrees.

 

[Yann04]

Some quite good Passages

Work was another matter. I quickly learned that ‘recovery’ was the narrative required there. That should have been the clue. narratives about long COVID were diverging, and negative talk about those with long COVID was emerging. Within the media, articles with titles such as ‘The stigma of long COVID: Why don’t people believe it’s real’ (lindsay, 2022) appeared. Public comments on an article in the UK’s Daily Mail reporting that one in five people were unable to return to work a year after COVID-19 infection contained pejorative attributions galore: ‘long Covid is just ME’; ‘long Covid is the new bad back’; ‘the new fibromyalgia’; ‘young people lack resilience’ (morrison, 2023). attributions of laziness, lack of legitimacy as a disease, and malingering were emerging. It was later revealed that the then UK Prime minister, boris Johnson, had written one word on a report on long COVID in 2020: ‘bollocks’.

The need to identify who is ‘risky’ is more pressing when considering COVID-19 compared to long COVID. long COVID is not transmissible; it stops with the person who has it. nevertheless, we see again signs of shame and blame towards those who have long COVID travelling down existing fault lines in society. Take, for example, a widely viewed meta-analysis of what factors make long COVID more likely, published in 2023 in the Journal of the American Medical Association (Tsampasian et al, 2023). This review of 41 studies found that the top factors that contributed to long COVID risk were not changeable – namely age (being over 40), sex (being female), and being in hospital for co-morbidities or severe COVID-19. nevertheless, media articles, such as one in The Washington Times, published a summary of this paper with the emphasis on the ‘lifestyle’ risks such as smoking and higher bmI (body mass index)/obesity for long COVID, even though these risk factors were less prominent in the study (Salai, 2023).

Many people seem to simply want to forget, to move on. What, then, of those who have long COVID who may not be able to move on?

De Waal (2021) has written about the issue of collective memory in relation to epidemics in history. epidemics which conform to the ‘war metaphor’ narrative, where we wage war against a disease but science/ medicine triumphs (for example, as with cholera), are remembered as heroic episodes of human accomplishment. Others, such as the Spanish Flu (influenza) pandemic of 1916–1918, follow a different story. De Waal characterises the influenza pandemic as ‘The Joker’ which tricked the weakened population that had survived the great (First World) War. Spanish Flu killed between 60 and 100 million, and then left the world stage, with no obvious medical victory. De Waal argues that, in terms of collective memory, the great War flu story is particularly quietly told. Indeed, prior to the COVID-19 pandemic, many knew little or nothing about it.