The burden of rheumatoid arthritis: Tolerating the uncertainty

A study of the victims of rheumatoid arthritis provides an insight into the demands placed upon living when uncertainty is exaggerated beyond the usual level of toleration, and analyzes the strategies arthritics develop in order to tolerate this uncertainty.

Abstract

Being physically comfortable and doing a simple chore can raise one's spirits to levels of supreme joy. Persistent pain and wretched tiredness brings one to near despair. In the next forty years, I wonder how many variations thereof I shall experience. The above is excerpted from the journal of a 29-yr-old woman, who has been afflicted with rheumatoid arthritis since age 15. It has become her practice to make such notations during sleepless, pain-filled nights. Her phrase, “I wonder”, only mildly captures the social-psychological burden of rheumatoid arthritis— that of tolerating the uncertainty that pervades all facets of the disease condition, and life with it. All living requires tolerating a considerable amount of uncertainty—to state this is to state the obvious. But a study of the victims of rheumatoid arthritis provides an insight into the demands placed upon living when uncertainty is exaggerated beyond the usual level of toleration. This paer examines the disease conditions which produce variable uncertainty. It then analyzes the strategies arthritics develop in order to tolerate the dread of progression, the social strategies of normalizing (covering-up, keeping-up and pacing) and of re-normalizing (adjusting to reduced activities). Considered throughout are the problems generated by both the uncertainly and by the use of these strategies (problems such as justifying inaction, the fear of dependency, eliciting help). Although each strategy is taken up separately for purposes of clarity, the ultimate social-psychological tyranny of tolerating the uncertainty lies in balancing thier use, one against the other. Compounding this is the additional problem of balancing drug side effects against relief. This burden of balancing limited options is examined at the conclusion of the paper.