Many people with cancer are living with side effects of their treatment, yet they are side effects often considered taboo by much of the public, according to a recent survey by Macmillan Cancer Support. This is worrying, Macmillan says, as many people with cancer may be too shamed to seek help with life-changing side effects, potentially putting their health and recovery at risk. The survey found that 1 in 5 people with cancer find it difficult to seek help with their side effects because of embarrassment or shame, and 1 in 4 of people with cancer said they have been reluctant to talk about issues relating to their disease because of how other people might react.

Recent research by sociologists has identified similar concerns amongst patients with gynaecological cancer and breast cancer. In a Norwegian study of young women being diagnosed with gynaecological cancer (Solbraekke and Lorem 2016), it is reported that many of the women felt disrespected during medical encounters, e.g. when they were asked about sexual partners. Due to the taboo around their cancer type, many of the women also felt they had to be discrete about their illness, and couldn’t talk openly about their worries and side effects with friends, family and colleagues. That some cancer patients often feel they have to disguise their emotions and manage their appearance towards others was also reported in a study undertaken at Nottingham University in the UK (Trusson and Pilnick 2017).

In a study on the tension between the ongoing stigma that surrounds cancer and the often ultra-positive view associated with breast cancer awareness and fundraising campaigns, researchers found that some patients felt that they have to prioritise other people’s needs for comfort and reassurance. Therefore, rather than sharing personal accounts of their illness experience, they would provide a public account in line with what they felt they ought to do. For example, some patients felt that they didn’t want to burden other people and instead felt compelled to display positivity, and if they did talk about their cancer, they felt that they had to do so in positive terms. The research concludes that the consequence of not being able to speak about their emotions may mean that patients will miss out on receiving social support because others assume they don’t need it.

Similar to how women with breast cancer and their social interactions are influenced by wider social discourses on breast cancer, how patients with cancer make decisions around returning to work or remaining outside the labour force is also influenced by wider social structures. This is the finding from a study undertaken at Newcastle University, exploring the connections between cancer and employment amongst cancer patients in the North East of England (Moffatt and Noble 2015). The study found that some patients would feel shamed for being reliant on benefits during or after cancer treatment, and that some would fear being labelled as scroungers or workshy. This kind of stigmatization has to do with wider social structures, the authors argue, such as the benefits system, welfare reform and wider economic climate. All of these things influence the decision, choice and constraints around returning to work or not, and how patients with cancer experience employment disruption, which is a major factor in the experience of cancer. The impact of wider social structures on experiences of cancer and feelings of stigma is important to acknowledge, the research concludes.

The American sociologist Ervin Goffman (1963) has famously written on the topic of stigma. Stigma, he wrote, is ‘an attribute that is deeply discrediting’, yet he stressed that it is not an attribute of the individual person, but rather, stigma is a social judgement created in and through a social environment. It is a result of a social process of labelling a particular action or attribute as undesirable, which often leads to negative beliefs such as stereotypes. Goffman’s work focused particularly on the consequences of stigmatization, and how the stigmatised individual would manage their identities. He suggested that individuals play scripted parts when interacting with other people, and when managing the shame of stigma, he argued that individuals would make use of certain strategies, for example, hiding or revealing only certain parts of themselves – as the research from Norway and Nottingham, mentioned above, also showed.

While Goffman’s work on stigma has been very influential in the development of anti-stigma campaigns and in furthering research on social stigma and its effects, sociologists have since added to and moved beyond his theorisation, not so much to critique Goffman, but to ask questions that he didn’t. Medical Sociologist, Graham Scambler (2006: 2009), for example, notes how Goffman didn’t expand much on the insight that stigma is a social relation, and that all social interactions are shaped by and reflective of many social structures including class, status, gender and ethnicity. Scambler therefore concludes that any strategies for stigma reduction must take into account the ways in which social structures like class and gender shape specific social interactions, for example, when patients with cancer interact with health care professionals and/or family and friends.

Such social structures include language and how we talk about people, cancer, illness, etc. There is a wealth of research and literature on language and power, and how words help shape our understandings of the world and how we connect with the world. We will return to this topic in a future post, but for now, we highlight that language is a powerful tool. In the event of illness or bodily disruption, for example, it is common for people to use metaphors to understand and cope with their illness. In a study from Brazil on the stigma that surrounds cervical cancer, researchers found that some women would use stigmatising narratives to make sense of their cancer. For example, women would describe themselves as being ‘rotten inside’ and some would blame themselves for having sexual desires and for their own misfortune (Gregg 2011).

The American writer and critical theorist Susan Sontag (1978) is famous for her work on ‘Illness as Metaphor’ and for challenging the victim blaming in the language often used to talk about disease and illness. She argued for resisting metaphoric thinking; however that can be difficult when illness metaphors run deep into our notions of health, medical progress, stigma, sexuality and gender. In the study from Brazil, none of the women resisted the stigmatizing metaphors, in fact, they used them to make sense of their new illness identity, and more so, they entwined them with therapeutic metaphors and narratives of virginity and cure that the researchers argue allowed them to maintain hope (Gregg 2011).

How we describe and talk about our bodies and ourselves carries weight, and by using certain words and ways of talking, feelings of stigma might be reinforced or challenged. Language is therefore important in the reduction of stigma. But while words help define our experiences, it might be that patients simply don’t have the words and language to talk about their bodies, their cancer and the side effects of cancer treatment, or that they find it difficult to talk about, because certain side effects have not been addressed by health care professionals, who might for example feel unease or not be qualified speaking to patients about these matters. It is also important to acknowledge that there may also be affective forces at play, such as unconscious feelings of knowing something is different, but not being able to articulate those feelings. The lack of words and these concerns may well influence some patients’ feelings of stigma, and how they think they should present themselves to others. In our research on patients’ experiences of radiotherapy treatment for gynaecological cancer, these are some of the things that we would like to explore.

References:

Goffman, Erving (1963) Stigma: Notes on the management of spoiled identity. USA: Prentice-Hall. Gregg, Jessica L. (2011), ‘An unanticipated source of hope: stigma and cervical cancer in Brazil’ in Medical Anthropology Quarterly 25 (1): 70-84
Moffatt, Suzanne and Noble, Emma (2015), ‘Work or welfare after cancer? Explorations of identity and stigma’ in Sociology of Health and Illness 37 (8): 1191-1205
Scambler, Graham (2006), ‘Sociology, social structure and health-related stigma’ in Psychology, Health & Medicine 11 (3): 288-295
Scambler, Graham (2009), ‘Health-related Stigma’ in Sociology of Health and Illness 31 (3): 441-455
Solbraekke, Karin N. and Lorem, Geir (2016), ‘Breast-cancer-isation explored: Social experiences of gynaecological cancer in a Norwegian context’ in Sociology of Health and Illess 38 (8): 1258-1271
Sontag, Susan (1978) Illness as Metaphor. Farrar, Straus and Giroux
Trusson, Diana and Pilnick, Alison (2017), ‘Between stigma and pink positivity: women’s perceptions of social interactions during and after breast cancer treatment’ in Sociology of Health and Illness 39 (3): 458-473