People who don’t have to live with chronic illness or the long-term effects of a debilitating injury sometimes imagine the prospect with dread; they may envision themselves consumed by frustration, regret, and depression. It isn’t so, several studies have shown.
In one of the studies, researchers looked at 49 patients with failing kidneys who required a strict diet and hours of hemodialysis at least three times a week. They were compared to 49 healthy controls matched for age, race, sex, and education.
All participants completed a questionnaire on their moods, stating the proportion of time they spent, on average, at each of five different mood levels, from very pleasant to very unpleasant. Then they carried a specially programmed handheld organizer device for a week as they went about their daily lives. Each day, at random intervals, the device prompted them to describe and rate their moods on the five-point scale, to note any pain or physical discomfort, and occasionally to evaluate their overall satisfaction with life.
At the end of the week, both dialysis patients and controls were asked to look back and estimate how much time they had spent at each mood level. They were also given a description of the experience of a particular dialysis patient, then asked to put themselves in the place of that patient and rate the resulting moods. Finally, the dialysis patients were asked to estimate how much time they would have spent at each mood level if they had never had kidney disease.
Patients and controls, on average, reported similar moods and rated them equally pleasant or unpleasant. Patients did not express less satisfaction with life or even report more pain and fatigue, and their retrospective estimates matched their day-to-day ratings. The healthy controls, on the other hand, remembered more unpleasant moods than they recorded day by day.
The controls thought that if they had to live the life of a kidney patient they would feel much worse than the patients actually felt. Conversely, the patients thought good health would make them feel much better than the healthy controls actually felt.
Maybe the ratings by the two groups differed so little because the daily lives of kidney patients on dialysis are not so different from the daily lives of healthy people. That can hardly be said of people with amyotrophic lateral sclerosis (ALS), Lou Gehrig’s disease. Two studies at Columbia University examined the experience of 80 people at the late stages of this disease. Once a month, until they died or could no longer communicate, they were interviewed by a standard technique that gave measures of depression, hopelessness, attitudes toward death, and quality of life.
The first study showed that ALS patients were generally not particularly depressed and did not become more depressed as they approached death. At the start of the research, 81% were not depressed at all, and only 9% had symptoms of major depression — even though more than a third had been treated for depression at some time in their lives. More than half were never depressed over the entire course of the study. Depression was not correlated with financial condition, religious beliefs, or the involvement of a husband or wife.
The second study concentrated on the 53 patients who died during the study. Twenty three of them (43%) had thought about ending their lives. Ten expressed this wish to others, and three hastened their deaths by requesting medications that they knew would have the side effect of weakening their breathing muscles. But apart from their answers to questions about whether they would be “better off dead,” these patients were not significantly more likely to be depressed than the rest. In fact, the three who succeeded in hastening their own deaths reported less suffering and a stronger sense of control.
The results of these studies confirm others suggesting that people with severe chronic illness are often as happy as the physically healthy, whose well-being they overestimate. The real-time reports from kidney patients, in particular, may lay to rest doubts about whether the chronically ill habitually exaggerate their sense of well-being to make others feel better, or misremember the proportion of mood peaks to mood troughs in their daily experience. Happiness, it seems, is more a function of temperament and less a function of circumstance than most people — including the chronically ill themselves — suspect.
Albert SM, et al. “Wish to Die in End-Stage ALS,” Neurology (July 2005): Vol. 65, No. 7, pp. 68–74.
Rabkin JG, et al. “Prevalence of Depressive Disorders and Change over Time in Late-Stage ALS,” Neurology (July 2005): Vol. 65, No. 7, pp. 62–67.
Riis J, et al. “Ignorance of Hedonic Adaptation to Hemodialysis: A Study Using Ecological Momentary Assessment,” Journal of Experimental Psychology: General (January 2005): Vol. 34, No. 1, pp. 3–9.