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Book Excerpt — You're Stronger Than You Think

Sarah Lezotte’s kidney problems started in 1991 with what felt like a case of the flu. Fifty-eight years old at the time, she had never experienced any major health problems before, but these flu symptoms were lasting longer than normal. So Sarah decided to see her primary care doctor, who discovered that she had early signs of kidney failure. He referred her to a kidney specialist, who drew a slew of blood tests, ordered a pile of x-rays and ultrasounds, and finally biopsied her kidneys. Then he sat Sarah down and told her the diagnosis: she had vasculitis, a generic term for inflammation (itis) of the blood vessels (vasc). Many diseases cause vasculitis, the best known being lupus. But Sarah did not have any of the diseases that typically cause vasculitis—she didn’t have lupus or Sjögrens syndrome or polyarteritis nodosa. She didn’t have scleroderma or sarcoidosis or giant cell arteritis. Instead, she was stuck with the vaguest of all diagnoses—plain old vasculitis—as if she had cancer but no one could tell her what kind of cancer: “Lung cancer? Breast cancer? Colon cancer?” the patient asks. “No,” the doctor replies, “just cancer.”

Without a more specific diagnosis, Sarah was stuck with some rather nonspecific treatments, such as prednisone, which puffed her face up like the Pillsbury doughboy, and Imuran, a chemotherapy drug that made her feel 90 years old. She dutifully took her pills every day, but her vasculitis continued to wreak havoc with her kidneys. Within three years, Sarah Lezotte began receiving dialysis.

What would it feel like to have kidney failure and be forced to undergo dialysis to stay alive? To be hooked up to a dialysis machine three times a week? Never to be able to eat fruits and vegetables without worrying that you will experience dangerous levels of potassium in your blood? To fear that drinking more than 48 ounces of liquid in a day will make you swell up like the Michelin man?

I have yet to take care of a patient who looked forward to the initiation of dialysis, no matter how severe their symptoms from failing kidneys. Prior to requiring dialysis, most experience years of progressive kidney failure. They watch their blood pressure and take their medicines in hopes of delaying the need for dialysis. Most recognize that dialysis will dramatically change their lives, forcing them to squeeze 15 hours of treatment time into their weekly schedules and to forgo travel unless they can find dialysis centers willing to accommodate them. In imagining life on dialysis, their minds are usually filled with images of plastic tubing, impersonal machines and—worst of all—needles.

People with progressive kidney failure are not alone in assuming that life on dialysis must be dismal. When my research team asked healthy people to imagine that they had end-stage kidney failure, they predicted that such an illness would leave them unhappy for the majority of their waking hours. Many told us they would give up more than half of their remaining life span to avoid becoming a dialysis patient. A significant number said they would rather be dead.

About the only group of people who think life on dialysis is not miserable are those actually on dialysis. When my team asked dialysis patients to estimate the percentage of time they were in good, neutral or bad moods, they told us they were in good moods a majority of the time, extremely good moods 40 percent of the time and bad moods less than 20 percent of the time. In fact, their self-reported mood estimates were indistinguishable from those of a group of healthy people we interviewed (matched to the patients by age, gender, race and education level). In other words, based on their self-reports, dialysis patients were just as happy as healthy people.

Waste products coursing through their veins, a banana cream pie away from a life-threatening potassium level, and they were as happy as healthy people? It is easy to question these glowing reports of life on dialysis. In fact, we had paid dialysis patients to tell us about their moods. Could receiving money from pleasant research assistants in itself make people happy, thereby causing them to overstate how happy they are?

Global Happiness Reports Versus Actual Moment-to-Moment Mood

Pleasure and pain are not remembered the same way they are experienced. People’s memories are disproportionately influenced by peak experiences and by whether their experiences have good or bad endings. As a result of these faulty rememberings, researchers are increasingly relying on novel ways of capturing people’s true moment-to-moment experiences. In fact, my research team was skeptical enough of the happiness reports we received from dialysis patients that we sent each one home with a shiny new personal digital assistant (PDA) to find out how happy they really were. The PDAs were used to collect mood data over the course of one week.

We programmed the PDAs to beep at random intervals every 90 minutes or so for a week (during waking hours) to ask people about their moods. “Thinking back to right before this PDA beeped, what was your mood? How happy were you? How anxious, depressed, frustrated, joyful?” We gave PDAs to the same two groups I described earlier, the dialysis patients and the healthy controls who had reported happiness levels practically identical to each other. By collecting such data over the course of a week—out of the presence of our mood-
elevating research assistants and including those early morning and late night hours when people might be
emotionally overwhelmed by their health problems—we could find out whether people were as happy moment to moment as they told us they were overall.

Sarah Lezotte was one of the dialysis patients who participated in our PDA study. To learn more about how her kidney problems affected her life, I visited her several months after the study in her rural Michigan home. Sarah is a tiny, energetic woman, with short brown hair that doesn’t look gussied up and a quick smile that doesn’t look forced. Despite her diminutive size, she does not look as frail as you would expect from someone who has struggled with kidney disease for more than a decade.

She told me that when she first developed kidney problems in the early 1990s, she chose to receive a different type of dialysis called peritoneal dialysis (PD), a form of treatment in which her own body was turned into a dialysis machine several times a day. To do this, a surgeon implanted a tube into Sarah’s abdominal wall. The inside of the tube nestled underneath her skin but above her peritoneal membrane, a layer of connective tissue that separates her intestines from the lower layers of fat underneath her skin. Sarah’s peritoneal membrane acted like a sieve. She would pour one-and-a-half liters of fluid through the tube, which would settle in underneath her skin but above her peritoneum. Waste products in Sarah’s bloodstream would drift into her peritoneal space and bump into the dialysis fluid hanging out there. The dialysis fluid would equilibrate with waste products from her bloodstream, thereby drawing the toxins out of her blood. Four hours later, Sarah would drain the dialysis fluid and all the waste products within it and then pour in another one-and-a-half liters of clean dialysis liquid, starting the process all over again. She went through this process four times a day, with each filling and draining taking up another hour, leaving her a few hours of wiggle room to get in all four treatments within a 24-hour period. Then she would wake up the next morning and start all over again.

“It was hard for me to be very active when I was on PD,” Sarah told me. “With all that fluid inside me, I felt half-pregnant all the time, and the pressure on my stomach gave me pretty bad heartburn most of the time. When you’re on PD,” she continued, “you have to slice your life up into four-hour intervals, because that’s how long you have until you need to exchange the PD fluid. So you can go out to dinner or you can go out to a movie, but you can’t go out to dinner and a movie.” Sarah described her PD life to me almost matter of factly, with no sense of bitterness.

When we asked her to estimate her typical mood, Sarah, like most of the dialysis patients in our study, told us she was in a good mood the majority of her waking hours. In her case, she had been much sicker in the past, so such an answer might be plausible. But most people with kidney failure have many additional health problems. Like Sarah, some have vasculitis, which can affect other body parts. More commonly, people develop kidney failure after years of diabetes or high blood pressure. Consequently, many experience not only kidney failure but also heart disease, vision loss and damage to their feet and legs from hardening of the arteries. Most of the dialysis patients in our study who told us they were so happy had several other health conditions to cope with besides kidney failure. Could they really be as happy as they said? It was time to find out what their PDAs had to say about their moods.

When we downloaded data from the PDAs, we discovered, just as we feared, that dialysis patients had overestimated how often they were in extremely good moods. Rather than experiencing really good moods 40 percent of the time, as they had told our research assistants, they experienced such moods only 20 percent of the time.

I don’t believe these dialysis patients were lying to our research assistants to cover up how miserable they were. Instead, when they estimated what their moods were like in a typical week, they probably thought back over the previous week, and the extremely good moods they had experienced came to mind more easily than the mildly positive moods they had experienced.

Science is fun when you develop a theory to explain a phenomenon and can test whether that theory fits with other phenomena. For example, if the memorability of extreme moods accounts for these overestimations, then the dialysis patients should also overestimate the percent of the time they spend in really bad moods—which is exactly what we found. They predicted being in extremely bad moods six percent of the time, while experiencing such moods only one percent of the time—a result that also punctures the theory that dialysis patients overstated their good moods because they couldn’t acknowledge how unhappy they were. Continuing this line of reasoning, we figured that if the memorability of extreme moods accounts for these overestimations, healthy people should also overestimate the percentage of time they spend in really good and really bad moods. Which, again, is exactly what we found. People—whether healthy or sick—predicted they would experience extremely good and bad moods a smaller proportion of the time than they actually experienced such moods. The PDA method was proving to be a nice way to compare people’s actual moods to the moods they predicted, revealing that people do not have perfect insight into their emotional lives.

So what did the PDAs tell us about how happy these two groups of people were? Both groups had estimated that they were in good moods approximately two-thirds of the time, with some of their predicted moods being extremely good and some being only mildly pleasant. They had overestimated the frequency of the extremely good moods. But had they been wrong to say that they were in good moods the majority of the time?

No. Just as they had predicted, dialysis patients reported being in good moods approximately two-thirds of the time. In fact, they reported strikingly similar levels of happiness as healthy people, as well as similarly low levels of anxiety and depression. Based on their moment-to-moment moods, then, dialysis patients were indistinguishable from healthy people. It appears that when these dialysis patients told us they were happy the majority of the time, they knew what they were talking about.

Why Is It So Difficult to Imagine Dialysis Patients Being Happy?

Dialysis patients are generally happy, and yet few of them would have predicted this could be the case. The general public imagines life on dialysis as being filled with unhappiness, and yet in our study the dialysis patients were just as happy as healthy people. Why is it so hard to imagine that these dialysis patients are happy?

When people imagine unfamiliar circumstances, they often focus their attention too narrowly on the unique aspects of these circumstances—the parts of their lives that would change—without considering the many ways their lives would be unaffected by the new circumstances. Psychologists call this phenomenon a focusing illusion. Imagine, for example, that you are a high school senior choosing between attending two similar universities, one in the upper Midwest and the other in Southern California. Where do you think you would be happier? If you are like most people, you would expect to be happier in California where you would be able to enjoy year-round sunshine. Yet when psychologists David Schkade and Daniel Kahneman measured the happiness of college students in California and the Midwest, they found no difference. Both groups of students were equally happy.
When comparing college life in California and the Midwest, most students focus their thoughts on an obvious difference between the two locations—the weather—ignoring all the other parts of college life that would influence their moods. Imagining life in California, Midwesterners envision beach parties and scantily clad
classmates. Thinking about life in the Midwest, Californians imagine flat landscapes and parka-clad coeds. Yet most of college life has nothing to do with bathing suits or parkas. Students enjoy football games and music recitals and suffer through organic chemistry labs and
8 a.m. exams, whether they live in California or the Midwest. In fact, weather does not affect people’s moods as much as they anticipate, with good weather primarily creating positive moods only among those who spend the majority of their waking hours outdoors.

The same kind of focusing illusion also influences the way people think about illness and disability. When imagining paraplegia, for example, many people without paraplegia focus on what it would feel like to get around in a wheelchair or to lose the ability to enjoy favorite pastimes; they do not think about all those aspects of their lives that would be unaffected by paraplegia, such as their ability to enjoy a television show, a good conversation or a delicious meal. When imagining dialysis, they focus on needles, blood-filled tubes and 12 hours a week of being attached to a machine, ignoring the other 150 hours of the week when they would not be at the dialysis center. And they overlook the social companionship they are likely to experience at the dialysis center.

But are focusing illusions inevitable? Most experts don’t think so. For example, psychologists Daniel Gilbert and Timothy Wilson have shown that college football fans overestimate how much the outcome of the game will influence their moods over the following week, because the fans focus too narrowly on the game without thinking enough about all the intervening events that will affect their moods later in the week. Yet these two researchers have also shown that this kind of focusing illusion can be avoided. When football fans fill out an imaginary diary describing the week they expect to experience following a football game, they think more broadly about all the events in a typical week, other than a football game, that would influence their moods. As a result, they no longer mistakenly predict how strongly the football game will affect their moods.

Can Defocusing Help?

Encouraged by these results, my colleagues and I set out to see if we could rid people of a focusing illusion when they imagined life with a disability. We tried to defocus people, to get them to think more broadly about how disabilities would affect their lives. Worried that people would focus too narrowly on how specific aspects of their lives would be affected by experiencing paraplegia from a below-the-knee amputation, we asked them to think about how such disabilities would affect a broad range of life domains, such as their work, spiritual and family lives. We theorized that these broader thought processes would make people realize that the disability in question would have little effect on their lives as a whole.

As expected, we found that many viewed these disabilities less negatively after thinking more broadly about their lives, commenting on how our defocusing exercise helped them think more thoroughly about what life with a disability would be like. But to our surprise, for every person who viewed life with a disability less negatively after our exercise, two or three others viewed the disability more negatively. For most, the more they thought about life with a disability, the worse they imagined it would be.

People overestimate the long-term emotional impact of illness and disability, imagining that kidney failure or a spinal cord injury will make them miserable, when, as we have seen, the majority of people with kidney failure and spinal cord injuries are happy. Indeed, there seems to be no easy way to get people to think more broadly (or accurately) about what life with such circumstances is really like.

As mentioned earlier, I met with Sarah Lezotte three months after she had participated in our PDA study in hopes of gaining some insight into how dialysis patients manage to find happiness despite having such poor health. What I didn’t mention was that by the time I met with Sarah, she was no longer a dialysis patient. Two months after completing our PDA study, she received a kidney transplant. Her health was now better than it had been in more than a decade, and she was feeling more energetic and optimistic than she had in years. I was delighted about her good fortune, but I still wanted her perspective on how she had been able to find so much happiness during her long struggle with kidney failure. So I was surprised to learn now that she did not have very positive memories of her life on dialysis.

“Dialysis days were essentially lost,” she told me. She explained that she would drive 40 minutes to the dialysis center, remain there for three-plus hours on dialysis, and then drive 40 minutes back home. By then, her morning would be gone, and after a brief lunch she would settle down for a nap, exhausted by the long commute and the tiring dialysis session. But the truly hard part was the wiped-out feeling she got after the session.

Sarah had given me insight into how dialysis had affected the rhythm of her day-to-day life, but I still did not have a feel for how it had affected her overall mood. “Oh, I hated being on dialysis—it was miserable,” she said.

Miserable? I was surprised because I had her data. I knew Sarah was happy during her dialysis days, or at least I knew that she said she was happy when she carried around our PDA. I reminded her that she reported being happy the majority of the time. “Yes, I believe you,” she said. “But you see, unlike other dialysis patients, I had hope for receiving a transplant. I don’t know if I would have been so happy if it hadn’t been for that hope”—a happiness, by the way, that she had largely forgotten about a few minutes earlier when describing her life on dialysis.

Hindsight Isn’t Always 20/20

As we’ve discussed, healthy people frequently underestimate how happy they would be if they experienced serious illness. But when I met with Sarah Lezotte, I witnessed another type of misperception: having been on and off dialysis for the previous 10 years, she now seemed to have an overly negative view in retrospect of what it had been like to experience kidney failure. And so, rather than gaining insights about how she found happiness despite such a serious illness, I found instead that her instinct was to minimize just how happy she had been. With the success of her new transplant, Sarah was quite happy now. Indeed, after all she had gone through to complete the transplant, she assumed she must be much, much happier now than she had been before the transplant.

Sarah Lezotte is by no means unusual in being somewhat out of touch with her own emotional life. People are so convinced that happiness is a matter of circumstance that they forget how much they are actually able to adapt to their circumstances. I should have expected Sarah’s memory to be tricked in this manner. We had already discovered in our PDA study that people have powerful intuitions about how severe illness ought to affect them, and that these intuitions shape the way they perceive their emotional lives. For example, we asked our dialysis patients to imagine what their moods would have been like if they had never experienced kidney disease. They predicted that they would live in an almost perpetual state of glee, a level of happiness significantly higher than the moods our healthy control subjects actually experienced. These overestimates occurred because people had trouble imagining that big changes in their lives would not have large emotional consequences.

The Effect of Time

Is there anything we can do to improve the way people think about circumstances they might encounter? My research team has found that people’s predictions about the emotional effects of illness and disability change when they are prompted to think about how their emotions are likely to change over time. We asked a group of people to imagine how happy they would be if they had paraplegia. Then we asked them to think about a terrible event that had occurred in their lives six or more months ago. Did their emotions get stronger or weaker over time? Did the event influence their long-term moods more or less than they would have guessed? Do they think the experience of paraplegia would get stronger or weaker over time? After a few such questions, we asked them once again to imagine how happy they would be if they experienced paraplegia. Their estimates changed dramatically—they predicted much more happiness than they had previously predicted after they had thought about their own recent mishaps. People do recognize that strong emotions generally fade over time. Ask them to imagine their moods one week, one month and one year after experiencing a spinal cord injury, and they estimate dramatic improvements over time. They know that adaptation happens, but many do not think about adaptation unless prompted.
When I asked Sarah Lezotte to think back on her dialysis days, she focused in on those aspects of her life affected by dialysis—that same focusing illusion I discussed earlier, the one that is so hard to get rid of. She also seemed to dismiss the idea that she had adapted to life on dialysis. But she, too, could be prodded to think about her emotional resilience. When she recounted her past misery and lamented about her inability to go on if not for her hope for a transplant, I asked her to think about what she would have done if she found out she could not receive a transplant. She quickly reappraised her situation. “I imagine I would have found some way to deal with that, but I don’t know how,” she replied. People intuitively grasp the idea of adaptation. They just may not know how it happens.

Sarah knows more about what it is like to live with kidney failure than I will ever learn. Yet despite this knowledge, gained through such prolonged experience, she is susceptible to the same tricks of memory and imagination as the rest of us. What was it like to be on dialysis? I do not think she can answer that question very easily. Perhaps if I had filmed a day in her life while she was on dialysis and played it back to her, she could have given a more accurate report of her emotional life at that time. But I am doubtful even that would work. What would any of us make of such a film? Would we watch ourselves brushing our teeth and cleaning dishes and assume that we must have been having a miserable day?

Sarah Lezotte is a remarkable woman. She has maintained an optimistic view of life despite everything she has been through and plans to return to doing charitable work once she recovers completely from her new kidney transplant. Sixty-eight years old, with the best health she has experienced in a decade, she hopes to get out of the house and give something back to the world. I totally admire her for the way she has fought through all her health problems. And I wish her the best of luck in achieving her new goals. Meanwhile, I will try not to think about the problems she might encounter en route to the decade of charitable activities she envisions. I don’t even want to consider the possibility that her new kidney will fail, or that at the age of 68, some new illness will enter her life and prevent her from living out her dream. Nor will I let myself think of the likelihood that she will emotionally adapt to her kidney transplant—that she will soon get used to the joys of vegetables and bananas and iced tea, taking them for granted, and, one day at a time, putting off that dream of doing charitable work. I won’t let myself think about this. I don’t even want to imagine the possibility.


The above excerpt is abridged from the book You’re Stronger Than You Think: Tapping Into the Secrets of Emotionally Resilient People,

by Peter Ubel, MD, copyright 2006 by Peter Ubel and published by McGraw-Hill books. Dr. Ubel is a professor of medicine and psychology at the University of Michigan.

ABILITY Magazine
Other articles in the Brian Wilson issue include Letter from the Editor Health and Happiness; Congressman Etheridge — Volunteerism for All; Headlines — AT&T, A&E, Accessible Tent, Fibromyalgia; Humor Global Warming; Employment — The ADA and People with Hearing Loss; Google — New Accessible Search; Freedom For Life — Accessible Adventure; Staglin Family Vineyard — Good Wine & Good Causes; Schizoaffective Disorder — What You Need to Know; Universal Design — How to Build Your Dream Home; Book Excerpt — You're Stronger Than You Think; Events and Conferences...subscribe

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