Illness Experience Essay

An illness trajectory encompasses the experiences of a person as they journey along the course of their illness, and is shaped largely by significant social and internal responses to the illness itself (Gitterman, 2013). Assessment and understanding of a disease’s typical illness trajectory can be very insightful, as it provides a care team or family members with an indication of how a person may change and what they may endure emotionally following diagnosis (Hellsten & Medellin, 2010, p. 985). A diagnosis of lung cancer for instance, produces a very interesting illness trajectory, encompassing a wide array of feelings, experiences and changes. Following thorough review of the relevant qualitative literature on lung cancer experience, a few poignant themes seem to best exemplify lung cancer trajectories. Firstly, majority of research and almost all lung cancer patient participants described the experience of stigmatisation, and associated guilt, shame, and silence, largely due to lung cancer being synonymous with smoking. This stigmatisation seemed to be a partial catalyst to two other important themes; firstly participants experienced a sense of loss of identity and self-worth, following diagnosis. Secondly, a very common experience was that of changing relationships, both in social and family contexts. The rationale of this report is to explore these themes further, and illuminate possible causes and outcomes of these experiences for a lung cancer patient’s trajectory.

Stigma The first theme identified is that of stigma. Goffman described stigma as a social process, involving the “reduc(tion) in our minds” of a person, because of an attribute, whether physical or pertaining to their character (1963, p. 3). For patient’s with lung cancer, this feeling of being stigmatized is mediated by the common association of the disease with smoking, and the societal attitude of it being a ‘self-inflicted’ disease (Bertero, Vanhanen, & Appelin, 2008, p. 866). As one participant in research on lung disease explains;

‘…everybody feels that lung cancer, I believe anyway, is selfinflicted…the stigma is definitely to do with smoking’ (Chapple, Ziebland, & McPherson, 2004, p. 1470).

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Lung cancer therefore falls into Goffman’s stigma category of ‘blemishes of the individual character’ (1963, p. 4), since regardless of the actual cause of the lung cancer, patient’s living with the illness often feel others will presume smoking was the cause. Both internal (felt) and external (enacted) stigma (Gray, 2002, p. 72) can therefore apply to the experience of lung cancer. For instance, in internal stigma, the person may ‘feel’ as though they are stigmatized from the rest of society. In one qualitative study on lung cancer experience, a participant used the description of feeling ‘dirty’ for having lung cancer as a disease, as well as the feeling of the cause of the illness being misunderstood;

‘…people think you’re dirty because you smoked. But I don’t think they really realize its not only from smoking’ (Chapple, Ziebland, & McPherson, 2004, p. 1470).

External stigma also applies, whereby a person may be avoided or rejected because of their lung cancer. In some studies, participants were able to cite tangible examples of stigmatization they experienced, due to having lung cancer specifically. For instance, one participant believed health care professionals trivialized lung cancer as merely a ‘smokers cough’;

‘If you went to the doctor’s with a small lump the size of a pea on your breast you’d be straight into the hospital but you can be coughing up phlegm for years and nobody will offer you a hospital appointment…you are just pushed to the back of the queue’ (Chapple, Ziebland, & McPherson, 2004, p. 1470).

Another patient felt research and resources were not given to lung cancer, and suggested it was the attitude of lung cancer falling into the ‘selfinflicted’ disease category which explained this;

‘…there is a massive difference…and you know I can only assume that its because its self-inflicted and because its smoking related’ (Chapple, Ziebland, & McPherson, 2004, p. 1470).

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Self-blame and guilt Stigmatisation was a strong and common theme in all qualitative research reviewed for lung cancer patient experience, and had a great impact on the patient enduring the stigma. In many cases, it leads to feelings of self-blame and guilt for patient’s own cancer (Gray, 2002, p. 74), irrespective of whether their lung cancer was smoking related or if the participant had ever smoked. One participant, a life-long non-smoker, felt deeply ashamed of their disease, and described lung cancer patient’s feelings of blame and stigma as well as discrimination;

‘Basically lung cancer patients find themselves in the position where they feel that they’ve cause it all themselves…they don’t get funding like other cancers get and probably that’s because we feel that its our fault.” (Chapple, Ziebland, and McPherson, 2004, p. 1470).

Lung cancer sufferers felt very responsible for their illness, irrespective of the causes of it. Of course, in some cases smoking was responsible, which made the participants feel even more regret about their choices and the role smoking played in their illness. This sense of shame and responsibility was noticed and described by an oncology social worker, when discussing a smoker patient’s reflections on having lung cancer;

‘They may say, “I brought this on myself” or “its my fault”. Sometimes they say “I should have listened to my family when they told me to quite” which creates an extra layer of guilt and blame’ (Conlon, Gilbert, Jones, and Aldredge, 2010, p. 101)

Silence These feelings of shame and guilt, arising from both the stigmatisation and the inner feelings of responsibility, may ultimately result in a patient wanting

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to adopt silence in talking about their illness. This silence could in some cases be interpreted as denial as appears the case in the following participant explanation;

‘I have anger…the anger is toward the cancer…but I don’t live it and I don’t talk about it’ (Zhang and Siminoff, 2003, p. 421)

But for others silence was out of humiliation. In a qualitative study concerning patients with incurable lung cancer, this patient describes their fear that even their family may suffer stigmatization should it become known that they have lung cancer;

‘I think that it is my affair…my and my family’s affair’ (Bertero, Vanhanen, and Appelin, 2008, p. 866).

According to Charmaz many illness sufferers may wish to stay silent in order to maintain their moral status, personal dignity, and even maintain a sense of control over their body and their illness (1999, p. 371). By staying silent, they are refusing to allow ‘a story of it to take form’ (Charmaz, 1999, p. 371). This seems to be certainly true for lung cancer sufferers, with this silence largely exacerbated by the additional feelings of stigmatisation experience.

Loss According to Charmaz, the idea of a loss in illness experience often encompasses a loss of self, due to experiences not unfamiliar to lung cancer patients; the experience of social isolation, being discredited, and humiliation (1983, p. 181). Parkes describes this loss as an ‘unrecognized’ or ‘hidden’ loss, explaining that some losses may go unrecognized because there are associated with shame or stigma (1998, p. 1522). This certainly applies to the illness trajectory of lung cancer patients, since stigma is such a common and critical theme. Furthermore, according to Refsgaard and Frederiksen, this experience shapes a change in self-image and self-worth (2013, p. 227), as lung cancer patients come to terms not only with their illness, but also the stigmatizing lung

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cancer label. Feelings of loss of identity were described in a qualitative study, where a participant references their strong desire to hold on to a part of themselves – their independence;

‘…you’re down, you’re out, you’re useless, and people are trying to help you and you’re not wanting people to help you sort of because you’re wanting to feel independent’ (Murray, Kendall, Boyd, Worth, and Benton, 2004, p. 42).

In holding on to their independence, that participant felt they would also be able to hold on to their identity as a human. Loss of self-worth also ties in to these feelings of loss of identity. In another study, a participant described feelings of low self-worth and of being separated from their own life, following a diagnosis of lung cancer;

‘I feel useless. When the quality has gone, life isn’t your own’ (Murray, et al, 2007, p. 397)

Suffering, according to Charmaz, is not only a physical status, but also a moral status in that it equates to relative human worth (1999, p. 367). This is evident in the trajectories of lung cancer patients, in that they feel devalued as a human following their diagnosis. Not only do lung cancer patients seem to feel their identity is changing, but their entitlements, and place in society feels diminished.

The ‘Modified Labeling Theory’ posits that once society labels an individual a certain way, for instance as a ‘lung cancer patient’, they are subject to continual responses from others confirming this label (Gonzalez, 2010, p. 7). With time, these responses force an individual into adopting their label and incorporating it into their identity (Gonzalez, 2012, p. 7). For people with lung cancer then, the constant perceived stigma and labeling surrounding their disease might ultimately cause these labels to become imbedded in their identity. For instance, according to Park, Crystal, Zlateva, Ianita, Blank, and Thomas,

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cancer-patients commonly identify with the terms ‘patient’, ‘victim’, and ‘person who has cancer’, even long into remission (2009, p. 430). Such a loss of identification was noticed countless times in reviewing the qualitative literature. Loss in the context of a lung cancer patient experience therefore equates largely to loss of self-worth and identity, and is perhaps instigated by the sense of external and internal stigma a patient experiences.

Relationship changes In reviewed studies many patients also noted changes they experienced in their familial and social relationships, following a diagnosis of lung cancer. These changes may not necessarily be due to the stigma of lung cancer alone, as a diagnosis of an illness alone may have precipitated a change. There is a good chancer, however, that the social changes at least may have been partially mediated by the addition of the social stigma attached to lung cancer, as discussed previously.

Previous research seems to contend that following an illness diagnosis, patients experience positive changes to their relationships (Schroevers, Ranchor, & Sanderman, 2006, p. 599). However, following review of qualitative literature, the opposite seems to be the case for lung cancer patients. In one qualitative study, which interviewed lung cancer patients, an elderly participant told of the loneliness and social relationship change, which accompanied her diagnosis;

‘There’s old friends won’t even take a cup of tea with me now I’ve got cancer’ (Murray, Kendall, Grant, Boyd, Barclay, and Sheikh, 2007, p. 397).

In another study, more than half the participants reported negative changes in their social relationships, following their diagnosis (Cooper, 1984, p. 305). One participant felt such a negative reaction; they decided to keep their diagnosis to themselves from then on, as their wife explained;

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‘He did tell an old school friend of his…his friend got real nervous. He has ordered another drink, but he just left… in the time he has talked about it since, he says “Ill never tell anyone else”’ (Cooper, 1984, p. 305).

In this participant’s case, we may speculate that the friend felt uncomfortable with the participant's lung cancer diagnosis, in part due to the stigma attached to the illness. In some cases, marital relationships also seem to change following a diagnosis of lung cancer, particularly in regards to family’s inability to communicate effectively with one another. In the same study as mentioned above, more than half the participants noted negative changes in their relationships, often accompanied by a lack of communication about the lung cancer. A participant, in explaining how alone they now feel, described this experience;

‘I don’t think we discuss half as much as we used to or are as close in conversation. I think we’ve drifted. I think we should sit down and talk like we used to, but we don’t’ (Cooper, 1984, p. 303).

Clearly, this change in social relationship following a diagnosis of lung cancer can have devastating effects on the participants’ illness experience, as it can lead to feeling of loneliness and fear.

Conclusion The experience of lung cancer patient is clearly overshadowed by the smoking stigma many experience, which can lead to a sense of loss and change in important personal relationships. Whilst these findings are not generalizable, since they are drawn from qualitative research findings, they are useful in grasping an idea of possible trajectories from lung cancer patients. This can greatly help shape appropriate care planning specifically within the context of lung cancer patient experiences.

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References Bertero, C., Vanhanen, M., & Appelin, G. (2008). Receiving a diagnosis of inoperable lung cancer: Patients’ perspectives of how it affects their life situation and quality of life. Acta Oncologica, 47, 862-869. Chapple, A., Ziebland, S., & McPherson, A. (2004). Stigma, shame and blame experienced by patients with lung cancer: Qualitative study. British Medical Journal, 328(7454), 1470. Charmaz, K. (1999). Stories of the suffering: Subjective tales and research narratives. Qualitative Health Research, 9(3), 362-382. Charmaz, K. (1983). Loss of self: A fundamental form of suffering in the chronically ill. Sociology of Health and Illness, 5(2), 168-195. Conlon, A., Gilbert, D., Jones, B., & Aldredge, P. (2010). Stacked stigma: Oncology social workers’ perceptions of the lung cancer experience. Journal of Psychosocial Oncology, 28(1), 98-115. Cooper, E. T. (1984). A pilot study on the effects of the diagnosis of lung cancer on family realtionships. Cancer Nursing, 7(4), 301-308. Gitterman, A. (2013). Handbook of Social Work Practice with Vulnerable and Resilient Populations. Columbia University Press: NY, USA. Goffman, E. (1963). Stigma; Notes on the management of spoiled identity. Simon & Schuster, Inc: NY, USA. Gonzalez, B. D. (2012). Depression in lung cancer patients: Role of perceived stigma. Psycho-Oncology. Retrieved from http://scholarcommons.usf.edu/cgi/viewcontent.cgi?article=2644&context=etd&se iredir=1&referer=http%3A%2F%2Fscholar.google.com.au%2Fscholar%3Fstart% 3D20%26q%3Dlung%252Bcancer%252Bstigma%252Bqualitative%26hl%3Den %26as_sdt%3D0%2C5#search=%22lung%2Bcancer%2Bstigma%2Bqualitative %22 Gray, A. J. (2002). Stigma in psychiatry. Journal of the Royal Society of Medicine, 95(2), 72-76. Hellsten, M. B., & Medellin, G. (2010). Symptom Management in Pediatric Palliative Care. Chapter 53. Oxford Textbook of Palliative Nursing, Ferrell, B. R., and Coyle, N. (Eds). Oxford University Press: Oxford, UK. Murray, S. A., Kendall, M., Grant, E., Boyd, K., Barclay, S., & Sheikh, A. (2007). Patterns of social, psychological and spiritual decline toward the end of life in lung cancer and heart failure. Journal of Pain and Symptom Management, 34(4), 393-402.

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Murray, S. A., Kendall, M., Worth, A., & Benton, T. F. (2004). Exploring the spiritual needs of people dying of lung cancer or heart failure: A prospective qualitative interview study of patients and their carers. Palliative Medicine, 18, 3945. Park, C. L., Zlateva, I., & Blank, T. O. (2009). Self-identiy after cancer: “Survivor”, “victim”, “patient”, and “person with cancer”. Journal of General Internal Medicine, suppl. Supplement 24, 430-5. Parkes, C. M. (1998). Facing Loss. British Medical Journal, 316, 1521-1524. Refsgaard, B., & Frederiksen, K. (2013). Illness-related emotional experiences of patients living with incurable lung cancer: A qualitative metasynthesis. Cancer Nursing, 36(3), 221-228. Scroevers, M., Ranchor, A. V., & Sanderman, R. (2006). Adjustment to cancer in the 8 years following diagnosis: Longitudinal study comparing cancer survivors with healthy individuals. Social Science & Medicine, 63, 598-610. Zhang, A., & Siminoff, L. A. (2003). Silence and cancer: Why do families and patients fail to communicate? Health Communication, 15(4), 415-429.



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