Spinal Cord Disorders: Uncertainty in Illness for Persons with Multiple Sclerosis
Jeff Canar, PhD
The importance of understanding uncertainty in illness as a predictor of psychological discomfort, an awareness of the unpredictability of certain illnesses, and the relationship between that uncertainty and emotional toll of coping with the illness is an important framework when working with individuals diagnosed with multiple sclerosis. There is a considerable degree of unpredictability associated with MS to which persons need to respond. Something as simple as planning for a vacation can be difficult because the person does not know how they will feel when it actually comes time to take their vacation. Additionally, because MS tends to affect persons in early to middle adulthood, adapting to uncertainty and unpredictability comes at a time when those stricken are likely to be in the prime of their life, placing further burden on their psychological health (McReynolds, Koch and Rumrill, 1999).
Multiple sclerosis is unique in that patients can be relatively symptom free for extended periods of time and then experience an onslaught of problems that make performance of day-to-day activities of daily living (ADLs) and independent activities of daily living (IADLs) difficult to accomplish. Since there are no especially reliable predictors of day-to-day symptom exacerbations, this most often occurs with little warning. A person with MS continually confronts uncertainty and the associated physical symptoms such as problems with physical sensation or loss of full ambulatory capacity, and psychosocial difficulties including the emotions resulting from disruptions in employment and interpersonal relationships, or the inability to independently perform routine activities of daily living. The person experiencing such shifting and unpredictable symptoms must struggle to develop coping strategies accordingly (Pakenham and Stewart, 1997).
There are several dimensions to uncertainty including information, inconsistency, unfamiliarity, and temporality (Neville, 2003). Multiple sclerosis creates difficulties for patients because there is uncertainty as to whether or not they will experience another exacerbation, when they will experience that exacerbation, and how long that period of decreased capacity or increased discomfort will last. When coping with an illness where symptoms are stable and reliable, one can deploy coping strategies that have worked in the past, as well as develop and practice new ones (i.e., there are predictable opportunities for learning and skill development). With MS, however, the situation is different. The type, extent, frequency, and duration of the exacerbations are all highly variable, so the opportunities for learning and practice are limited-the person simply does not have the repeated exposure to identical variables to be able to practice and develop reliable coping skills.
We might hope that being symptom free would provide valuable opportunity for learning, because when a person is emotionally distressed their negative mood and affect interferes with motivation and learning capacity. But, as we know, when patients are not in distress, they usually do not perceive a need for mental health treatment and are not proactive in seeking assistance and pursing change.
Uncertainty, in and of itself, is a neutral state. It is the cognitive appraisal of that uncertainty that can engender emotional discomfort. Generally speaking, uncertainty in illness reflects an inability to determine the meaning of illness-related events, assign values to objects or events, and accurately predict outcomes. Uncertainty can be appraised as either positive or negative, in other words, as an opportunity or a crisis (Neville, 2003). Thus, two persons can appraise the same uncertain situation in quite disparate ways. If an individual is confronted with a medical diagnosis, such as cancer, that person might focus on mortality and filter thoughts and feelings through a lens emphasizing poor prognosis. On the other hand, when confronted with the same scenario, another patient might focus on the inability for anyone to say with certainty when, or even if, the cancer might progress. That person is more likely to welcome the uncertainty because it offers hope.
This is not meant to encourage a state of denial. Rather, the example is meant to highlight that it is often the appraisal of the situation that becomes an important target for intervention. In this perspective, the clinician works to foster a change in the lens through which the person sees their situation. For example, the hopelessness theory of depression attributes the emotions to the experience of negative events and the attributions about those events (Kneebone & Dunmore, 2004). In this view, people who make internal (”It was my fault”), stable (”It’s always my fault”) and global (”No matter what I do, I always screw up”) attributions about negative events are more at risk for depression. Because persons with MS will experience many negative events, they are already at risk for depression. For persons with a relapsing-remitting form of multiple sclerosis, the very fact that the course of illness is uncertain allows a provider to challenge the stable and global attributions a person may make. So, for example, a person with MS can be challenged to take advantage of those times when they are asymptomatic in an attempt to diffuse stable (”I never have the energy”) and global (”This illness effects everything I do”) attributions.
Treatment can focus on working with patients to reduce their level of negative reaction to uncertainty by providing education about MS. Some persons can more effectively cope with the distress resulting from unpredictability if they are provided with information about the condition in question. While not true of everyone, some people can be considered information seekers. Answering questions, providing educational resources and reading materials, encouraging involvement in MS-related groups and activities are all strategies that can help those who do well with more information. Treatment can also focus on learning to cope with uncertainty and helping persons understand that sometimes they may have to give up the value of predictability, control and mastery, as the normal way of life (Neville, 2003). Persons can learn a more immediate, “one day at time” perspective and focus more on the moment than on the future. Another goal can be learning to tolerate the uncertainty living as normally as possible within the context of an uncertain illness-in other words, focusing on the now as much, or more than, on the future. Additionally, persons with MS need to be adaptable and understand that what is “normal” behavior on one day may not be normal behavior the next. The person strives to adapt expectations and behaviors based on the symptoms being experienced at the moment, shifting focus from the future to the here-and-now, present day.
References
Kneebone, I. & Dunmore, E. (2004). International Journal of Behavioral Medicine, 11(2), 110-115.
McReynolds, C., Koch, L. & Rumrill, P. (1999). Psychosocial adjustment to multiple sclerosis: Implications for rehabilitation professionals. Journal of Vocational Rehabilitation, 12, 83-91.
Neville, K. (2003). Uncertainty in illness: an integrative review. Orthopaedic Nursing, 22(3), 206-214.
Pakenham, K. & Stewart, C. (1997). The role of coping in adjustment to multiple sclerosis-related adaptive demands. Psychology, Health and Medicine, 2(3), 197-211.
Jeff Canar, PhD, editor of the Spinal Cord Disorders column, is a staff psychologist at the Spinal Cord Injury Service, Hines VA Hospital, Hines, Illinois. Comments and suggestions are welcome: jeff.canar@va.gov