If we look up the phrase ‘side effect’ in the Oxford English Dictionary (2016), we are presented with two definitions:
- ‘A secondary, unintended, and typically undesirable effect of an action, situation, etc.’.
- ‘Medicine. An effect (usually for the worse) of a drug or treatment other than that for which it is administered’.
Side effects present themselves in different ways. Side effects from radiotherapy treatment may include sore skin, tiredness, hair loss, feeling sick, problems eating or drinking, diarrhoea, stiff joints and muscles, sex and fertility issues, emotional issues, and lymphoedema, amongst others (NHS 2017). For many patients, however, some or all side effects are not experienced as ‘secondary to’ or ‘other than’, as the dictionary definitions suggest. In the previous blog post on living with lymphedema, guest blogger Corinne Singleton provides an insightful account of how ‘side’ effects can be anything, but ‘secondary’.
One thing that the language of ‘side’ effects does is that it fragments the patient’s bodily experience, structuring illness in a very specific way. Writing in 1989, the anthropologist Susan M. DiGiacomo observes how this fragmentation is often a temporal and spatial one. She explains: in biomedicine, disease is often categorised into acute vs. chronic. While the acute is generally viewed as treatable ‘here and now’, the chronic will persist over time, carrying with it issues of uncertainty and ambiguity. Chronic illness, she argues, then presents a challenge to biomedical efficacy – the ability of treatment to provide a beneficial effect.
One approach to managing the uncertainty and challenge of chronic illness (e.g. cancer), she writes, is then to break the chronic down into disorders that can be referred to other medical specialists. Here, care becomes fragmented in space and time e.g. a patient with gynaecological cancer may be seen and treated in time by not only an oncologist, surgeon, and therapeutic radiographer, but also a psychologist, fertility expert, dietician, lymphedema specialist and other specialists. As a result, a patient’s bodily experience and the effects of treatment become split into categories, where the language of ‘side’ effect, as it is conceptualised in biomedicine, helps make such as split, as it brackets effects of treatment into ‘primary’ and ‘secondary’ effects.
The medical anthropologist and biologist Nina L. Etkin (1992) similarly argues that how the effects of treatment are interpreted must be understood in the light of cultural ideas about efficacy and outcome. Importantly, that is not to say that biomedicine is not interested in ‘side’ effects, but as Etkin (1992: 100) remarks, in biomedical discourse, it is usually understood that ‘in order to conform to the biomedical paradigm, there must be a ‘primary’ effect to which all others are subordinated’. Such discourse, Etkin further explains, can be traced back to the scientific methodology that informs biomedicine, where specific diseases are seen and understood to require specific medical treatment. The language of ‘side’ effect, its use and role in biomedicine and clinical work then has a long history, which still today structures illness and treatment in specific ways.
DiGiacomo concludes her paper by arguing that the distress that some patients may encounter through their illness experience can be attributed, at least partly, to this kind of temporal and spatial fragmentation of patients’ bodily experiences that the language of ‘side’ effect helps to enable. DiGiacomo provides an example of an elderly woman who had been treated in hospital for approx. five years, during two of which she received chemotherapy. Over the course of the five years, the women had been seen by many physicians and specialists, yet she never really felt like she got any answers. This caused some level of distress for the patient. In an interview with a primary care physician, the patient explained that she hoped to have this ambiguity resolved by having ‘just one doctor’ who would be responsible for her care. What she was looking for, DiGiacomo explains, was then both spatial and temporal continuity of care: seeing the same doctor in the same place over time.
While the kind of continuity that the woman in DiGiacomo’s study was seeking may not be possible and practical or even beneficial to the patient’s care, DiGiacomo nonetheless observes what she calls a ‘temporal discontinuity’ in clinical discourse and practice, which ‘fragment[s] the patient’s bodily experience and knowledge about bodily experience’. As a consequence of this, she writes, patients ‘catch only fragmented reflections of themselves’ (p. 66). And this is problematic, DiGiacomo continues, as such fragmentation may not only hinder patients from creating personal meaning in illness experience, but by structuring the experience of illness like this, patients may be left with no choice in the matter of what is the ‘right’ or ‘best’ way to confront illness.
In the next blog post, we will further explore the realities of ‘side’ effects for patients, which tend to be much messier than the neat separation of ‘effects’ into ‘therapeutic’ effects and ‘side’ effects.
References
DiGiacomo, Susan M. (1989), ‘Clinical “sound bites”. Temporality and meaning in the treatment and experience of cancer’ in Arxiu D’ Ethnografia de Catalunya 7: 57-68
Etkin, Nina L. (1992), ‘”Side Effects”: cultural constructions and reinterpretations of Western pharmaceuticals’ in Medical Anthropology Quarterly 6 (2): 99-113
NHS (2017), ‘Side effects. Radiotherapy’. Available online: https://www.nhs.uk/conditions/radiotherapy/side-effects/ [accessed Jan 20, 2020]
OED (2016), ‘side effect, n.’. OED Third Edition March 2016. Available online: https://www.oed.com/view/Entry/179280?redirectedFrom=side+effect#eid [accessed Jan 20, 2020]