Since the mid-1800s we have known that multiple sclerosis is a progressive neurological disease with an unpredictable course. Back in the day, when someone was diagnosed with MS, it was impossible to predict their future beyond saying that they would probably have ups and downs, and probably get worse, maybe sooner, maybe later, and unfortunately there were no treatments that could reliable change that.
Fortunately, the past 25 years have radically changed our understanding of MS and how we manage it. When someone is diagnosed today we can give them much better information and offer treatments that do change the disease course. And that’s good news.
But the impact of MS isn’t just physical. It doesn’t limit its effects to the brain and spinal cord—MS also affects the quality of the life a person lives. Even though we can significantly slow the course of the disease, people still have to live with it and figure out ways to understand it and integrate it into their lives. When someone new to MS looks at the long list of possible symptoms, the potential life impact of MS seems daunting indeed. So it is useful and reassuring to note that despite all the grim possibilities, many people with MS manage to coexist reasonably well with the illness and live interesting, productive and happy lives. How do they do that?
This issue of InforMS will explore what we know about how people live successfully with MS over the long haul.
DISEASES VERSUS ILLNESSES
Medical anthropologists distinguish between diseases and illnesses. A disease is a pathological process in the body. An illness is the way it affects the life of the person who has it. The goal of treating a disease is to get rid of it or to minimize the damage it does to the body. The goal of managing a chronic illness is to limit the negative impact it has on the life of the
person who has it.
Multiple sclerosis is both a chronic disease and a chronic illness. How the disease affects people varies considerably. The presence and severity of symptoms can ebb and flow unpredictably. After an attack, symptoms can recede and sometimes completely disappear. We now have more effective treatments that help rein in the disease MS, but even when symptoms are minimal, the challenges of living with MS don’t disappear. Just knowing that you have this diagnosis can interfere with your self-confidence and provoke tremendous stress and anxiety because — regardless of how you are doing today — you don’t know what MS might do in your future. And, since no two people have the same disease, you can’t go to a textbook to find out what your prognosis is. Coping with this malignant uncertainty is one of the most challenging aspects of living with MS.
QUALITY OF LIFE
When someone is diagnosed with MS one of their biggest initial fears about the future is that they will be wheelchair-bound. Their fear is that they simply won’t be able to manage MS if they have to cope with much physical disability. To some extent the disruptiveness of MS is influenced by the type and severity of your symptoms. However, it is also affected by how you manage it, and that’s influenced by who you are and what you do. Individuals get MS, and each individual has strengths and weaknesses that can help or hinder the process of living with the illness.
While there are medical protocols for treating MS and tests to determine if treatments are successful, there isn’t a set of rules to tell you how to live with it or a definitive test to measure your progress. When we try to measure how successfully someone lives with MS, we look at quality of life factors such as emotional well-being, relationships and the ability to do the things you want to do. Quality of life is a tally of your current and anticipated sources of satisfaction minus your current and anticipated sources of worry and threat. Your “quality of life” is really your subjective assessment of whether you are obtaining what’s important to you.
The effect of MS on quality of life has been the focus of lots of research. Overall, studies report that people with MS have a decreased quality of life when compared with other chronic diseases. Somewhat surprisingly, however, disease severity is only a weak predictor of this.
Psychosocial factors—coping skills, mood, self-effcacy and perceived support—influence quality of life more than biological variables such as number of MRI lesions or muscle weakness. In fact, depression is the most significant predictor of reduced quality of life. Other strong predictors are hopelessness, lack of support, pain and cognitive impairment. How people view the future (whether their view is accurate or not) also has a substantial influence on how they rate their quality of life. Expecting or hoping for a favorable future yields higher ratings.
How successfully you have learned to live with MS — how well you adjust — is an important determinant of quality of life. What factors facilitate adjustment? A group of psychologists recently reviewed 72 studies that looked at this question. They found that psychological factors—not disease factors—are better predictors of individual adjustment. A high level of perceived stress predicts worse adjustment regardless of disease severity. Viewing MS as highly threatening is also associated with worse adjustment. Having a belief that problems can be overcome using your internal resources—self-efficacy—predicts positive adjustment. Satisfactory social support and positive interactions with important others are also associated with better adjustment. However, interactions that are either too critical or too solicitous appear to be unhelpful for adjustment. Not having a coherent understanding of MS is also associated with worse adjustment.
What is the take-away message? There are a lot of things about MS that we can’t change or control. But many of the ways that MS negatively influences quality of life are in areas that we can change by changing some of our behaviors.
Life on earth is stressful and having MS makes it more so. Coping strategies are techniques for regulating stress. They help us contain our anxiety and gain a sense of control. How we cope is dependent on our assessment of a problem and how threatening it seems, and on the tools we have for responding to it. There are two primary approaches to coping. Problem-focused strategies aim to change the situation and ease or eliminate the source of the stress. Emotion-focused strategies attempt to reduce the emotional distress caused by a stressor.
The studies that look at coping and MS find that, in general, problem-focused strategies — information seeking, problem solving, or direct action — and a few emotion-focused strategies — seeking social support, reframing the problem — are associated with better adjustment. However, two tactics — wishful thinking (hoping for miracles) and escape-avoidance (trying to forget the whole thing) — when used as primary coping strategies, consistently predict worse adjustment.
There are two primary approaches to coping: problem-focused strategies that aim to change the situation and emotion-focused strategies that attempt to reduce distress.
There isn’t a “best strategy” because, depending on circumstances and timing, one approach may be more useful than another. MS isn’t experienced as a single event. You don’t adjust to MS once, and then you are done. MS continues and your life continues and they interact with and complicate each other. A strategy that might be helpful at one point in the disease could be counterproductive at another.
George Bonanno, an expert on loss and bereavement and a professor at Columbia University, believes that people are generally pretty resilient and manage, one way or another, to survive some pretty tough stuff. Even when the coping strategies they use might look “ugly”—his term for behavior that we might normally call inappropriate or unhealthy—they can still be effective. Flexibility is key. He studied emotional expressiveness in groups of New York City college students in the months following the September 11th terrorist attacks. He was interested in how, and whether, students expressed or didn’t express their emotions about what had happened. He found that students who used only one behavior — either expressing emotion or suppressing it — fared about the same, but the students who were flexible and could switch between the two styles were measurably less distressed two years later.
Coping flexibility also benefits people with MS. People need different styles at different times in the disease process. Problem-focused styles are more adaptive when there are decisions to be made and solutions to be found. Some of the things that make life with MS difficult may be small but overlooked problems that can be solved. However, a problem-solving style can be problematic when, as is sometimes the case with MS, there isn’t a problem that can be solved. Some aspects of MS, especially uncertainty, may be better managed with emotion-focused strategies — for example, talking to a close friend, having a good cry, or escaping the whole thing by taking a nap.
COPING UGLY VERSUS LIVING RESILIENTLY
Almost everyone who has MS learns how to live with it somehow or another, but almost everyone struggles, and often the struggles are inelegant, unattractive and downright messy. For many people the struggles eventually lessen, but sometimes they don’t, and occasionally coping ugly evolves into living ugly. But sometimes, someone with MS will say that, despite the struggles of living with it, the diagnosis has been an overall positive experience because it caused them to think about their lives and change how they live in ways that they would not have done if MS hadn’t forced them to do so. Now, many people DO NOT feel that way and in fact become angry at the mere suggestion, and certainly no one is required to feel that way, ever. But the fact remains that some people seem to live more peacefully with MS than others. How might we understand that difference?
It appears that some people are more resilient in the face of traumatic life events than others. Resilience is a hot research topic and headline grabber. But what is it and where do you get some?
The idea of moving forward is important component of resilience because this recognizes that some of the most resilient people may still struggle every day.
In building design, resilience is defined as the ability to absorb or avoid damage without suffering complete failure. In human psychology, it is meant to describe someone’s capacity to rebound successfully from adverse life events such as serious illness or major traumas. Researchers differentiate between recovery and resilience. Resilience has some genetic underpinnings. Some people appear to have genes that provide them with more internal bubble wrap, so they simply are not as affected by traumatic life events as the rest of us. But resilience is also defined as the capacity to recover and grow from stressful life events. So, even if you lack internal bubble wrap, you can learn to rebound from traumatic events.
Yale psychiatrist and resilience researcher David Southwick has identified different traits that resilient people possess, among them optimism, flexible problem solving skills, and the ability to build and use support systems.
People who are resilient have a sense of optimism. Researchers distinguish between naïve and active optimism. Naïve optimism is a belief that, somehow, magically, things will just work out. Active optimists also believe that things will work out—not magically—but because their own efforts will ensure that they become or stay that way. Optimists don’t ignore negative information, but they mostly pay attention to negative information that is relevant to whatever challenge they face.
Resilient people are effective at triage. They pay attention to the things they can do, they don’t waste a lot of time on things they probably can’t change, and they know when to quit. They are realistic, veering towards pessimism, about the problems they face, but optimistic and positive about their abilities to manage whatever problems they have to face. They look problems in the eye but they have strategies to compartmentalize them and prevent them from being overwhelming. They recognize that having a bad day does not necessarily mean they are having a bad life.
They look for opportunities to learn and they have flexible problem-solving skills. Instead of giving up because they can’t do something the way they used to, they figure out a different way to do it. Or, failing that, they figure out how to do something else that is consistent with their values and is important to their sense of who they are. They are willing to try something new.
Resilient people develop good support systems and then use them. They let others help them and they help others. They exercise their bodies and their minds by staying active and engaged in activities that are meaningful for them.
Resilience is a trait that some people simply have. But resilience is also a process and more than a genetic trait, it is a set of skills that people can develop. PTSD researcher Rachael Yehuda, Director of the Traumatic Stress Studies at the Mount Sinai School of Medicine wants to broaden the notion that resilience is equivalent to the Timex watch that takes a licking and keeps on ticking.
“When a watch is dropped, it doesn’t improve. But people who are traumatized sometimes do end up in a better place than they started. My current definition of resilience involves a reintegration of self that includes a conscious effort to move forward in an insightful, integrated, positive manner as a result of lessons learned from an adverse experience. The idea of moving forward is an important component of resilience because this recognizes that some of the most resilient people may still struggle every day.”
How do people with MS develop resilience? It’s not easy or quick and it doesn’t happen overnight. It takes a long time to learn how to live with MS. Getting good information about the disease is helpful. So is getting good medical care. Managing your mood and treating depression when that’s a problem are also critical because depression saps your energy, interest and optimism. Building a support system of people who actually understand and speak your language is key. So is letting go of “But I used to be able to . . .” and trying something different. Cultivate patience with yourself. Know that you can change and your ability to adapt is rich.