When I speak to healthcare workers about shame, and why we need to understand shame and its effects, the question I hear most frequently is: “What’s the difference between shame and stigma?”
Stigma has been a very useful idea in healthcare. It helps both healthcare workers and patients understand the social impact of an illness or condition. Identifying a condition as ‘stigmatising’ can show us how living with this condition can lead to negative social experiences such as discrimination, judgement, social exclusion, vilification, ostracism, labelling, loss of status, prejudice, unfair treatment, among others. People who live with illnesses or conditions, such as obesity, HIV or lung cancer, are commonly stigmatised because it is perceived that these conditions are a result of poor choices or lifestyle habits. Infectious diseases are also stigmatised because of fears of infection and contamination.
Sometimes stigma that occurs in a healthcare context may not at all be health-related, but will still be health-relevant. For example, stigma associated with low literacy levels, poverty, social deprivation, food insecurity, homelessness, criminal justice, sexual violence, domestic abuse or other traumas may be highly relevant in healthcare contexts and impact on how people access and receive healthcare. Overall, there is plenty of evidence that shows that living with stigma increases stress, decreases one’s capacity to cope, negatively affects mental health and may negatively affect access to healthcare.
While it is clear that having a stigmatized condition, or living with stigma can negatively impact one’s health and health outcomes, there is still some lack of clarity about how stigma is experienced by people who live with it, and also how healthcare workers are to adequately recognise stigma and work in a way that helps to reduce its negative effects. The philosopher Phil Hutchinson notes that stigma can be hard to find ‘in the wild’: it is both everywhere, but also hard to pin down and point to. Stigma is not experienced directly (as one might experience the pain or discomfort associated with an illness), instead it is a ‘category term’ used largely by researchers to make sense of negative social phenomena, such as discrimination and prejudice, while the individuals experiencing these phenomena are unlikely to use the term ‘stigma’ to describe their own experiences. The exceptions, of course, are those from highly politicised patient communities, such as those with HIV or ME/CFS, who use the language of stigma as a helpful tool in their patient activism.
A useful and accessible way for clinicians to understand how stigma is experienced, and hence how it can impact clinical encounters and interfere with healthcare, is to focus on its emotional dimension. If a person lives with stigma, then they most likely live with an anxiety that they will be judged negatively, or that they will be treated as though they are ‘worth less’ than others. More accurately, what they probably live with is the constant fear of feeling shame, or actively being shamed, when their stigmatised condition or circumstance is noticed. What this means is that people living with stigma are anxious about being made to feel that they are ‘less than’, that they are ‘unworthy’, that they are ‘contaminated’ or ‘disgraced’ in some way, and will be treated in negative ways as a result.
Because the experience of shame, or even just the anticipation of shame, can challenge rationality and reason, the ‘necessity’ to avoid shame can come at the cost of even harming or hurting oneself, for instance by not seeking medical help even when the person is aware of a health issue. Understanding the experiential features of shame will give healthcare professionals a greater sensitivity to stigma and its impacts in clinical settings and encounters.
To answer the question: “What’s the difference between shame and stigma?, we can think of stigma as the label attached to a person that designates them, or makes them feel, as ‘less than’ or ‘contaminated’ or ‘unworthy’, as a result of unfair or unjust social norms. And we can think of shame as the emotional experience that frequently accompanies living with stigma.
While there has been a huge amount of research into health-related stigma, there has been surprisingly little research about health-related shame. It is important to understand shame because it is shame that drives behaviour and decision-making, and in healthcare contexts, shame can easily lead to disengagement, non-disclosure, lying, withdrawal and avoidance. It is the emotional experience of shame along with the decisions, behaviours and actions that can be used to avoid shame and shameful exposure — rather than simply the label of stigma — that impacts on health and healthcare seeking behaviours.
In short, we need to undertand shame in order to tackle the adverse effects of stigma.
To read more about the relationship between shame and stigma, and how these experiences impact on health and healthcare, I have explored these ideas at length in the articles “The Effects of Shame and Stigma on Patient Care” and “Shame Anxiety, Stigma and Clinical Encounters”.
Luna Dolezal, Professor of Philosophy and Medical Humanities, Wellcome Centre for Cultures and Environments of Health, University of Exeter
8th May 2024
