By Sarah Earthy
The quote in the title comes from an interview with a middle aged man who had sustained fractures to his leg in a cycling accident:
“And they said ‘six weeks in plaster, two weeks of physio’. Now in my stupidity I thought, I really feel stupid saying this, I thought that after that two weeks I would be more or less okay and it’s just not like that. It really isn’t like that at all.”
I wrote last year (https://blogs.surrey.ac.uk/sociology/2014/05/28/getting-back-to-normal/) about an ESRC funded research project, Getting Back to Normal?’ Patients’ Experiences and Expectations following Major Illness or Injury (http://www.gettingbacktonormal.org.uk/), the aim of which is to get closer to what recovery is ‘really like’ from the perspective of patients themselves. The project is a collaboration between Professor Hilary Thomas and Elaine McNeilly from the University of Hertfordshire and Judith Sleney and myself in the Department of Sociology at the University of Surrey. We have been carrying out secondary analysis of 165 qualitative interviews conducted with men and women who experienced one of four serious health events; heart attack, leukaemia, a critical state of health involving admission to intensive care or a serious injury. The interview data on experiences of heart attack, intensive care and leukaemia come from the archive of the Health Experiences Research Group at Oxford University’s Department of Primary Care Health Services (http://www.healthtalk.org/) and that on injury from the UK Burden of Injury Study (Lyons et al 2007).
Differences between the four types of health event do seem to be important in framing patients’ experiences and expectations of recovery. This isn’t surprising when you think about the embodied nature of particular forms of illness or injury and associated differences in treatment and continuing need for care. Perhaps less obvious is the way in which the ‘genesis of illness’ (or injury) – a phrase coined by Gareth Williams (1984) in the context of rheumatoid arthritis to explore the individual’s perception of the root cause of their illness extending beyond the purely biomedical to social and other dimensions – casts a long shadow into the period of recovery. Whether the event came out of the blue or followed a period of feeling increasingly unwell matters not only for understanding what happened but also for predicting or negating the risk of recurrence. Interviewees’ accounts of heart attack were often framed within a discourse of a health behaviours – both in terms of disbelief that this had happened to them and the construction of recovery as regaining confidence in tandem with adoption of a healthier lifestyle. Cultural associations of different types of event are also important. Being told you or someone you love has ‘cancer’ has a different resonance from being injured in a road traffic incident, however serious those injuries might be. Yet both types of event – leukaemia and RTIs – are experienced as unexpected and unpredictable. The extent to which the event could have been prevented frames people’s confidence during recovery and in their future health – are they ‘cured’, ‘in remission’ or ‘at risk’ that the event will recur? Each construction means something different for the individual’s agency, their outlook and how they are viewed and treated by others.
We are also interested in how the individual’s socio-demographic characteristics and personal circumstances affect in a qualitative way their experiences of recovery. Engaging with four datasets means that we can make these comparisons within the same health event (for example men and women’s experiences of heart attack; younger and older people’s experiences of acute leukaemia) and across all four health events (e.g. the challenges faced in returning to work following a period of critical illness compared with a serious injury). For many interviewees, the period of recovery was marked by anxiety not only about physical progress but also the effects of incapacity on important aspects of everyday life: money, work, relationships and social and leisure activities. As Macmillan Cancer Support reported in 2013, the financial impact of serious illness can be significant; not only in terms of loss of income for the patient and carers but also because being ill or injured brings additional costs – prescription charges, transport costs, a need for additional help at home, physical adaptions at home or even a different type of accommodation. Returning to work after an extended period off sick is not always straightforward and whilst some interviewees talked about their employers being flexible and supportive, a third of the sample who were working at the time of the health event ended up changing job, reducing their hours or giving up work altogether. Many interviewees talked about the effects of continuing fatigue and their worry that they would be viewed negatively by supervisors or fellow workers.
A third important theme coming out from the data was interviewees’ sensitivity to the effects of their sudden incapacity on others. Many described with gratitude how family and others rallied round to help; other interviewees were less well placed and managed their recovery largely in isolation. But even when others were willing and available to help, dependence and the inability to fulfil usual roles placed a considerable strain on relationships in the short and longer term. Some interviewees responded with selective disclosure (hiding their illness from elderly parents, children or acquaintances) or more generally disguised the extent of their physical weakness and emotional vulnerability. This resonates with Kathy Charmaz’s conceptually rich exploration of the management of identity in chronic illness (e.g. Charmaz 1991).
These and other challenges faced by patients in getting back to being ‘more or less okay’, was taken up by many of the speakers at a day conference on Patients’ Experiences of Recovery held in London in March this year (http://www.gettingbacktonormal.org.uk/events/) and will be the subject of publications from the project over the coming months.
Charmaz, K. (1991) Good Days, Bad Days: The Self in Chronic Illness and Time. New Jersey: Rutgers University Press.
Lyons, R.A., Towner, E.M., Kendrick, D., Christie, N., Brophy, S., Phillips, C.J., Coupland, C., Carter, R., Groom, L., Sleney, J., Evans, P.A., Palister, I. and Cofey, F. (2007) The UK Burden of Injury Study – a protocol, BMC Public Health, 7:317. doi:10.1186/1471-2458-7-317.
Macmillan Cancer Support (2013) Cancer’s hidden price tag; revealing the cost behind the illness, London: Macmillan Cancer Support.
Williams, G. (1984) The genesis of chronic illness, Sociology of Health and Illness, (2): 175-200.
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