Stigma’s changing face

In the second of our ‘Recalibrating Stigma’ mini-takeover, Fay Dennis and Hannah Farrimond explore the contextually specific and contingent nature of stigma.

Stigma is emergent and contingent. This claim might seem obvious. Stigma is, by definition, something (a constraining or discrediting ‘mark’) that happens in association to something else, for example, a certain illness or identity. Yet, the way in which stigma is often written about and measured in academic research is as if it is a fixed entity that remains stable over time. It is certainly the case that many stigmas are enduring, as are the intersecting social and political economic ‘fault lines’ where they erupt – poverty, race, gender, and disability. However, we also need to pay attention to how and why stigma erupts at particular moments, then intensifies or decreases as social meanings and practices shift. Bringing together two case studies in this essay, we plot these emergent qualities of stigma as well as reflecting on their effects.  

We draw on the case studies of Long Covid and addiction which are explored in depth in our respective chapters for the recent edited collection, Recalibrating Stigma: Sociologies of Health and Illness. Prior to 2019, no-one had even heard of Coronavirus disease/Covid. Yet, almost immediately, people with Covid-19 were feared and stigmatised (Choi 2021). Some were quite dramatically shunned within their communities. As the fear of Covid-19 has receded over time, another form of stigma has come to the fore, namely, the stigmatisation of people who have Long Covid: the long-term disabling post-viral syndrome that can follow the acute version of the virus (WHO 2022). Although Long Covid is common, with estimates of it affecting up to 400 million worldwide (Al-Aly et al. 2024), people with Long Covid report being disbelieved and neglected by healthcare professionals, as well as discounted by others in society (Pantelic at al. 2023). Why is this the case, when so many suffer?

Stigmas do not come out of nowhere. Stigmas are situated within a network or ‘assemblage’ (Deleuze & Guattari 1988) of other stigmas. This was clearly demonstrated by President Trump who insisted on calling COVID-19 the ‘Chinese Virus’ and used it to propel his racist campaign of anti-‘foreign’ nationalism and border control (Kuo 2020). For Long Covid, the associated stigma also relates to disability and other post-viral syndromes (e.g. myalgic encephalomyelitis/chronic fatigue syndrome, and postural tachycardia syndrome, among others) where symptoms and those who experience them are discredited through narratives of psychosomatics and deserving and undeserving illnesses/disabilities, casting affected communities as lazy and undeserving of state support. Long Covid is thus part of what can be called a ‘stigma lineage’ of similar stigmas, many of which have been subject to intense debate and social conflict about what causes them (Spandler & Allen 2018).

Another reason Long Covid stigma has become amplified is that many of those who are at risk of stigma are from marginalised groups often blamed for their predicament. Those at greater risk of Long Covid include those who are medically classified as ‘overweight’ or ‘obese’, women (who are often disbelieved or invisible in healthcare more generally), people with disabilities and those who are socially disadvantaged (Tsampasian et al. 2023). There are many complexities associated with getting Long Covid, but popular media tends to highlight ‘lifestyle’ factors as a core contributor, leading to shame and blame for those affected (Salai 2023). In addition, the societal desire to forget and move on from the Covid-19 pandemic, common in the aftermath of other pandemics such as the 1918 influenza epidemic (often problematically referred to as Spanish Flu), means that the presence of people with Long Covid makes us uncomfortable. They embody the fraught recent period of Covid history.

Does this mean, then, that people with Long Covid will always be stigmatised? No, this seems unlikely. As stigma intensifies, unexpected or disruptive events or groups can come along and interrupt stigma processes, such as advocacy groups or researchers and scientists working together to further research. Paying attention to the unpredictability of stigma gives hope that it can be disrupted and countered.

The ability to disrupt stigma is evident in drug addiction. To make this point, we look closer at what stigma is and how it acts. Stigma can be thought of in terms of its constraining effects on people’s life chances and the kinds of social roles or subjectivities they are able to inhabit. For example, most people will have many roles available to them. As authors of this blog post, we are authors, but we may also be mothers, teachers, friends, employees, daughters, and so on. But for those who are connected to stigmatised identities like the addict (or Long Covid), there is a blocking effect, preventing them from ‘becoming other’ – that is, as more than that stigmatised identity.

Stigmatised subject positions like ‘the addict’ have an overriding quality, eclipsing other possibilities. Addiction is seen as incompatible with idealised notions of motherhood, employment, and being a good daughter. Indeed, it is institutionally designed to be so. Drug-related criminal convictions, for example, can make it impossible to gain employment and housing. Newborn babies may be taken from mothers, who are designated ‘unfit’ before having a chance to prove themselves otherwise. Such infrastructures restrict the kinds of lives available to people who use drugs – out of work, in an environment where others may be also using and selling drugs, and for those mothers, traumatised by the loss of their child. In this way, the addict identity quite literally ‘blocks’ other ways of being, acting, and feeling in the world. It is this blocking effect that can be understood as stigma in action.

If stigma erupts along social and political ‘fault lines’, often where there is fear, like we saw with Covid-19, addiction stigma is no different. ‘Addicts’, like those with Long Covid, make us uncomfortable. ‘Addicts’ represent the antithesis of who we are implored to be in advanced neoliberal societies according to our Enlightenment-based neoliberal values of freedom, autonomy and rationality (Keane 2002; Sedgwick 1999). ‘Addicts’ are feared as compulsive, dependent, and irrational. Indeed, these are the very fears that the ‘War on Drugs’ is built on – that drugs destroy lives and if they were allowed to flow freely, people would become depraved ‘zombies’ and useless neoliberal citizens (Zigon 2019). A fear of contagion associated with infectious diseases, such as HIV/AIDS which has been historically linked to people who inject drugs, only compounds these fears.  

It can be very difficult to achieve de-stigmatisation in these socially and politically charged spaces. Recent attempts by scientists and clinicians to root conditions such as Long Covid and addiction into predominantly biological and medical models are problematic. For example, telling people with addictions they have a ‘brain disease’ can limit people’s perception of how much they can change and conversely contribute to this Othering. Instead, we argue that anti-stigma work involves making space for those differences in the abilities or behaviours of those designated as ‘addicted’ and those experiencing Long Covid in an enlarged sense of community where people can hold multiple identities. The desire to disrupt stigma calls on us to zoom in, where possible, on the hidden spaces where people are already occupying multiple subject positions (e.g. in advocacy or activism), to resist these constraining forces and bring about possibilities for difference and ‘belonging without othering’ (powell & Menendian 2024). If stigma is a constraining effect that can reduce life to one subject position or identity then we might consider addressing it through making alternative subject positions and opportunities more available to people, like in the case of employment for people with drug-related convictions. Having tracked how stigma mutates and takes effect, and is both predictable and unpredictable, this potential for unpredictability gives us hope that stigma can be disrupted.

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The edited collection Recalibrating Stigma: Sociologies of Health and Illness is available as an open access e-book (i.e. free to read and download) via the Bristol University Press website.

About the authors

Fay Dennis is Wellcome Trust Senior Research Fellow in the Department of Sociology at Goldsmiths, University of London, UK. Her research interests include the sociology of drugs, bodies, and creative research methods. Her contribution to the edited collection Recalibrating Stigma is titled ‘Readdressing Addiction Stigma: Making Space for Being in the World Differently’. It can be read here.

Hannah Farrimond is Associate Professor in Medical Sociology at the University of Exeter, UK. Her research interests include stigma theory, pharmaceutical cultures, and the sociology of addiction. Her contribution to the edited collection Recalibrating Stigma was co-authored with Mike Michael and titled ‘How Stigma Emerges and Mutates: The Case of Long COVID Stigma’. It can be read here.

References

Al-Aly, Z., Davis, H., McCorkell, L. et al. (2024) Long COVID science, research and policy. Nat Med 30, 2148–2164. https://doi.org/10.1038/s41591-024-03173-6

Deleuze, G., and Guattari, F. (1988) A Thousand Plateaus: Capitalism and Schizophrenia, London: Athlone Press

Keane, H. (2002) What’s wrong with addiction? New York: New York University Press.

Kuo, L. (2020) Trump sparks anger by calling coronavirus the ‘Chinese virus’ https://www.theguardian.com/world/2020/mar/17/trump-calls-covid-19-the-chinese-virus-as-rift-with-coronavirus-beijing-escalates

Pantelic, M., Ziauddeen, N., Boyes, M., O’Hara, M.E., Hastie, C. and Alwan, N.A. (2022) ‘Long Covid stigma: Estimating burden and validating scale in a UKbased sample’ PLOS ONE, 17(11): e0277317

Powell, j. a. and Stephen Menendian (2024) Belonging without Othering: How We Save Ourselves and the World. Stanford: Stanford University Press.

Salai, S. (2023) ‘Study links “long COVID” to unhealthy life choices’, The Washington Times, [online] 23 March, Available from: https:// www.wash ingt onti mes.com/ news/ 2023/ mar/ 23/ study- links- long- covid- unheal thy-life- choi ces/ [Accessed 28 January 2025].

Sedgwick, E.K. (1993) Epidemics of the will. In E.K. Sedgwick. Tendencies. Durham: Duke University Press. Pp. 130-143.

Spandler, H. and Allen, M. (2018) ‘Contesting the psychiatric framing of ME/CFS’, Social Theory and Health, 16(2): 127–41.

Tsampasian, V., Elghazaly, H., Chattopadhyay, R. and Debski, N. (2023) ‘Risk factors associated with post−COVID- 19 condition: A systematic review and meta- analysis’, JAMA Internal Medicine, 183(6): 566– 80.

WHO 2022 Post COVID-19 condition (Long COVID) https://www.who.int/europe/news-room/fact-sheets/item/post-covid-19-condition.

Zigon, J. (2019). A war on people drug user politics and a new ethics of community. University of California Press.