Meaning of Death

Control in the uncontrollable – the case of cancer

Isla Carboon
Isla Carboon , PhD candidate
University of Melbourne, Australia

A sense of control is fundamental to our wellbeing. An awareness of our agency and efficacy underpins the motivation for much of our behavior – without a belief that we can successfully act upon our environment to fulfill our needs, we no longer have a foundation upon which to proceed. Martin Seligman dubbed this phenomenon ‘learned helplessness’ and has highlighted its relationship to maladaptive states such as depression and physical illness (Peterson, Maier, & Seligman, 1993)

Theorists like Shelley Taylor (1989) argue the maintenance of self-control beliefs is so primary to adaptive living that we overcompensate by holding unrealistic beliefs about the degree to which we control events in our everyday lives. This is particularly salient when things are going favorably – we are much more likely to see ourselves as responsible, which in turn promotes a sense of self-efficacy. Interestingly when things go wrong this bias reverses and we are much more likely to point the finger of accountability at someone or something else – once again preserving a positive self-view.

‘Terror management’ theorists believe that we promote these beliefs in self-control and self- esteem in order to protect ourselves from deeply rooted existential fears of our vulnerability and mortality (Pyszczynski, Greenberg, & Solomon, 1998). Thus the occurrence of an unpredictable, uncontrollable threat to our wellbeing, or even our very existence, often create a crisis of meaning. The comforting notion that we are good people who undertake the appropriate behaviors to ward off danger is revoked by the trauma and we are left searching for some modicum of control in the uncontrollable.

My own research with people diagnosed with one of the blood cancers (leukemia, lymphoma, & myeloma) is examining this response. The cancer experience presents us with a life threatening malignant process within our body over which we have no direct personal control. To address this threat we are forced to hand over control for our continued existence to medical professionals who practice a jargon-ridden enigma of biology, chemistry and statistics which they themselves require around 10 years of rigorous training to master. This inability to ensure our basic survival is surely the ultimate challenge to our sense of self-control and in the case of illnesses such as cancer, it is not the only one. Physical illness can hinder the sense of control we maintain through pursuit of desired outcomes in life roles such as professional, partner, parent, friend and helper. For instance, people in my study who receive a diagnosis of acute leukemia are hospitalized immediately then confined to isolation rooms for weeks on end when chemotherapy destroys their immune systems. Beyond being unable to undertake the activities of everyday living, their loss of control often extends to the basic functions of eating, sleeping and toileting. Even when treatment is completed, the return to pre-illness functioning is slow with side effects of the highly toxic chemotherapy lasting for many months. With the ability to exercise control in almost every domain of their lives undermined, how do these people maintain a sense of self-control and protect themselves against helplessness?

One way to achieve peace of mind is to shift the focus of control behaviors toward achievable ends. For someone with cancer, having control over what may appear to others to be insignificant details, such input into the circumstances of an inevitable treatment, may go a long way in protecting against a sense of helplessness. One woman confined to an isolation room for over a month while undergoing stem cell transplantation, decorated her room with personal furnishings, diffused aromatherapy oils in an electric burner and placed a collection of flowering plants outside the window. Being able to exercise direct control on these aspects of the room she transformed what would be regarded by many as a prison into what she described as a “sacred space”.

Even in situations where opportunities to exercise this kind of direct control in associated domains is unavailable, other more cognitive devices can help preserve a protective sense of self-control (Thompson & Collins, 1995). To explain how this can be achieved, we need to understand the difference between direct (or primary) control and perceived (or secondary) control. In the former, our actions have a straight causal effect on outcomes, whereas in the latter there is no direct link between what we do and the desired outcome. Regardless of this both can produce a feeling of being in control.

Three types of secondary control, evident in the people I talk to who are in the very early stages of their cancer experience, are described in the personal control literature as: vicarious, illusory and interpretive (Rothbaum, Weisz, & Snyder, 1982). Vicarious control is gained through a personal affiliation with a ‘powerful’ other who can ostensibly exercise direct control over the situation. It does not seem to matter if that other is God, a doctor or a loved one, as long they are perceived as being in control, benevolent and trustworthy. In illusory control, a person acknowledges the randomness and unpredictability inherent in living but sees him/herself as having these random forces onside, that chance or fate as working in their favor. Even though they have cancer they still consider themselves as a lucky person. Interpretive control, more often referred to as ‘meaning making’ represents the oft felt need of people experiencing trauma to answer the question “why me?”. Arriving at a satisfactory explanation for the incident seems can help promote acceptance as well as a sense of mastery through solving the ‘why?’ puzzle. Such a process is reflected in the words of a woman in her twenties undergoing treatment for acute leukemia:

“I’ve gotten cancer, it’s shown me things – the important things that people don’t realize until they’re 65. I’m going through so much, the pain of it but I’m also getting good things, all these important lessons. I don’t want to forget them quickly because the way I think life works, it keeps giving you lessons over and over until you learn them, until you remember them…I don’t want to lose sight a year or two years from now of what I’ve learnt. Then, it might sound silly, but I think the cancer will come back to show me again, to put things back in perspective. I’ve got to keep in mind what I’ve learned and take that along…if I go back to the way I used to think, putting value on the wrong kind of things…I wouldn’t be surprised if I relapsed again.”

It is tempting to label this young woman’s interpretation about the contingency between ‘life lessons’ and malignant processes in her body as inaccurate, perhaps even dangerous, in so much as she vests direct control for continued remission in her adherence to these learnings. If the disease relapses there is great potential for her sense of control to transform into self-blame and guilt (Doan & Gray, 1992). It is for these reasons, those of us working with people experiencing cancer are well wary of the “double-edged sword” of such control beliefs (Wong, 1992). Nonetheless, we also know that maintenance of a sense of self-control in a person coping with such a highly averse event is vital to wellbeing, thus it is essential we learn to recognize and support control-preserving strategies that are both personally meaningful and contextually appropriate.

REFERENCES

Doan, B. D., & Gray, R. E. (1992). The heroic cancer patient: A critical analysis of the relationship between illusion and mental health. Canadian Journal of Behavioral Science, 24(2), 253-266.

Peterson, C., Maier, S., & Seligman, M. E. P. (1993). Learned helplessness: A theory for the age of personal control. New York: Oxford University Press.

Pyszczynski, T., Greenberg, J., & Solomon, S. (1998). A terror management perspective on the psychology of control. In M. Kofta & G. Weary (Eds.), Personal control in action: Cognitive and motivational mechanisms. The Plenum series in social/clinical psychology (pp. 85-108). New York, NY: Plenum Press.

Rothbaum, F., Weisz, J. R., & Snyder, S. S. (1982). Changing the world and changing the self: A two-process model of perceived control. Journal of Personality & Social Psychology, 42(1), 5-37.

Taylor, S. E. (1989). Positive illusions: Creative self-deception and the healthy mind. New York: Basic Books.

Thompson, S. C., & Collins, M. A. (1995). Applications of perceived control to cancer: An overview of theory and measurement. Journal of Psychosocial Oncology, 13(1-2), 11-26.

Wong, P. T. P. (1992). Control is a double-edged sword. Canadian Journal of Behavioral Science, 24(2), 143-146.