Pain-Free Living

What Is Quality of Life?

by Jackson Rainer, PhD

A woman and her husband sat with their therapist, talking over the impact of her recent diagnosis of rheumatoid arthritis (RA). “My quality of life is bad and is going to get worse,” she said. “I won’t be able to do the things that I’ve done before.” Throwing up her hands in frustration, she said, “I wish I had never heard about arthritis.” As the conversation continued, the therapist asked, “What do you mean by quality of life? Tell me more about those qualities that make life worth living.” She responded by saying, “Well, you know, it’s … well … I know I’m just not as good as I used to be.”

Being lost for words like this woman is more common than we might expect. People often use the phrase “quality of life” as a catchall term without having a good idea of what it means. Use of such familiar language may seem to make for effective communication (surely we all know what a good quality of life is). However, being diagnosed with a chronic health condition profoundly changes individuals and their circumstances, and colloquial, superficial language can leave them feeling worse rather than better, even though it’s meant to be encouraging. Another woman spoke to this notion when she said, “I had a friend who asked me one afternoon about my quality of life. ‘How close are you to being back to normal?’ she asked. That really hurt my feelings. I have a ‘new normal’ since the diagnosis and treatment began, and things are just different now. I will never be ‘normal’ again — at least, not like things were before I was diagnosed. She caught me off guard, and I couldn’t really put into words what I had actually done to make the changes in my everyday life work effectively. I wish I had better ways to talk about how things are different. I felt so misunderstood in my friend’s question and realized that I need to be clearer about how I define my quality of life, that is, my ‘normal.’”

A definition — broadly speaking

In a broad sense, quality of life has to do with the relationship between our traits and our states. Traits are relatively permanent tendencies that serve as the building blocks of personality. They are our abilities and the aspects of our temperament. Intelligence and the capacity to solve problems are traits. So are irritability, excitability, and optimism. Do you see the glass as half full — or half empty? Do you prefer to drink from the metaphorical glass and avoid philosophical discussions altogether? These ways of viewing the world are all traits. Someone who asks, “What’s he like?” is really asking, “What are his traits?” Traits define us as “who we are.”

States are circumstances. Unlike our traits, which stay pretty consistent throughout life, our states change from time to time. Being diagnosed with arthritis, living with the demands of treatment, and experiencing the progress of arthritis all involve changes of state.

We deal with states by relying on our traits. So quality of life can be seen as a measure of how well our traits can accommodate our changing states. Put another way, quality of life depends on how well we can integrate new circumstances into our lives — into our ideas about who we are. How we do this is expressed in personal and idiosyncratic ways. For example, a woman newly diagnosed with RA said to her husband, “This is not a way that I know myself.” She felt unprepared to deal with her new circumstances, knowing that her “tried-and-true” traits were no longer as effective as she’d previously found them. A man asked how he could live with the pain of arthritis after working during his robust young adult life as a football player simply said, “Things change, sometimes better, sometimes worse. I’m just trying to learn how to be sick in a healthy world.”

In context

On your journey with arthritis, as you try to identify or define what “quality of life” means to you, it helps to know that there are markers along the way. Understanding what to look for and how to read these markers allows you to experience the journey with full awareness and to navigate the new “rules of the road” with a greater sense of safety and mastery. In any context, quality of life has many dimensions. Think of these dimensions as quality-of-life markers. In the context of arthritis, the dimensions, or markers, to consider reflect functional ability, symptom management, tolerance of depression and anxiety, pain control, social integration, health and well-being, happiness, treatment strain, and life satisfaction. They are “universal” — common to everyone with arthritis. But how each individual reacts to and deals with them is personal and has far-reaching implications for quality of life.

Functional ability. Your functional ability is related to your capacity for productive activity. Productive activity can refer to anything from the ordinary activities of daily living to the specific activities required for your job.

Your level of functional ability has a large impact on your quality of life. But just as important is how you deal with the functional limitations that arthritis can bring. Take, for example, the English professor in a liberal arts college who was diagnosed with psoriatic arthritis. As her condition progressed, she became less able to stand and lecture, and editing papers grew more difficult because of the pain involved in using a pen. “I’ve been a college educator all of my adult life,” she said. “Because of my arthritis, I couldn’t keep doing what I wanted to. My brain stayed limber and my heart was full of passion and desire, but my body became less willing to cooperate. I became less and less productive, which left me more and more frustrated.”

Rather than become stuck in the frustration of her limited functional capacity, she learned to use voice-recognition software, which allowed her to remain productive. Regrettably, her arthritis eventually progressed to the point where she decided to accept early retirement from the college. However, she was able to redefine her functional abilities and is now devoted to writing. “I couldn’t just stop working,” she said. “It is not my nature. It has been quite an adjustment, though, to find ways to accommodate my life to what my body can and can’t do. Fortunately, I still feel active, and I have new work that keeps me satisfied.”

Symptom management. Generally, when people talk of their arthritis symptoms, they are referring to their pain and loss of functional ability. One man described his symptoms as “falling headfirst into an unknown world of aches and stiffness.” But quality of life can be measured not only by a person’s symptoms but also by his or her ability to manage them — by the ability, as the old song says, to “just pick myself up, dust myself off, and start all over again.”

Think of symptom management as a form of choice. An older woman once said to me, “I really don’t like my choices, but at least I have options. Even wading through obnoxious treatment choices lets me feel more in charge and in control of myself.” Quality of life is in this way related to the capacity to manage one’s symptoms — to a sense of mastery over the aspects of arthritis that can be controlled.

Tolerance of depression and anxiety. Anyone living with arthritis knows the emotional toll it can exact. There are times when individuals will feel varying levels of liveliness and deadness, energy and fatigue, depression and anxiety. One woman described her depression as “numbing, almost like psychological Novocain.” A man talked about his anxiety as “worrying about not knowing what I need.” Common to all experiences of depression and anxiety are threads of helplessness, fear of physical harm, fear of social disapproval, or loss of self-esteem. Learning to translate these threads into warning signs of the need for self-care can increase a person’s quality of life, even though he or she may not feel well.

Pain control. Pain is a deeply personal and unpleasant sensory or emotional experience. It can affect us either as it actually happens or as we anticipate it. Because it is so personal, pain is difficult to assess, and managing it can be hindered because different people have different perceptions of and responses to pain.

Think of pain as the body’s way of ringing the alarm bell that tells us “something isn’t right.” Quality of life is measured in part by how well you can translate and communicate the nature, experience, location, and quality of pain to others, who can then work with you to ease it.

Social integration. A woman spoke profoundly when she told me, “The most awful aspect of having arthritis is how it constricts my time with others. I need so much help to walk, stay tired a good deal of the time, and am cautious when others want to touch me.” As arthritis advances, individuals commonly redefine their social networks and connections because of physical limitations. But quality of life is closely related to your personal attachment to the people, places, and events that are most important to you. This woman found a way to stay connected. She continued, “I have a smaller circle of friends now, but they are the most important to me and for me. I know they sometimes feel like giving up on our friendship, but they never do, and I never take that for granted.”

Health and well-being. While it may seem odd to include health and well-being as quality-of-life markers for an individual with a chronic condition, they are nevertheless relevant and timely. Health refers not only to the absence of disease but also to the sense that there can be healing even if there is no cure. It speaks to a sense of vigor and of aliveness. Well-being has to do with putting things in perspective — seeing the “big picture.” A sense of health and well-being can help people prevail in the face of illness simply by giving them the belief that they will. Studies show that the expectation of health and well-being blocks pain by releasing brain chemicals that soothe and restore the body’s integrity. In this way, a sense of health and well-being can aid in hope and healing.

Happiness. Most people associate happiness with pleasure. But when it comes to quality of life, happiness is more closely related to the ability to be observant. You can find happiness simply by observing what happens. Observing allows you to shift your perspective and put some distance between yourself and your arthritis. In so doing, you can experience moments of transcendence, and these bring happiness. As you improve your observational skills, your capacity to experience this transcendence — and your quality of life — improves.

One woman told how her young grandson surprised her one bright spring morning by decorating her walker. He squealed with delight, yelling, “Chase me!” She said, “I didn’t know whether to laugh or cry. I wanted to chase and catch him, pick him up, and cuddle him in my arms. But I couldn’t. I loved his laughter and his creativity and felt incredibly old and worn out because of the arthritis. I guess you can have two feelings at the same time. What I do know is his irreverence with my walker helped put arthritis in its place.”

Treatment strain. Treatment strain refers to the emotional and financial costs of your arthritis treatment. We all understand financial costs and the strain they bring, but emotional costs can be just as heavy. Sometimes they come from the feeling that your health-care team has all the power. You may begin to feel, for example, that every prescription is an embellishment on the theme “we’re doing this for your own good,” which leaves you feeling small and weak.

Quality of life is best when you have trust in your health-care team and the treatments they prescribe. Never forget that while the health-care professionals suggest treatment options, it is your right to decide whether to take action or not. A prescription is a direction, not a mandate. When you are able to honestly and assertively discuss the potential side effects of treatments with your caregivers, the treatment strain is shared, reducing the burden on you.

Life satisfaction. Like health and well-being, life satisfaction may seem an odd quality-of-life marker for someone with arthritis. But having a chronic health condition — a condition that will always be with you — gives you a chance to move toward levels of maturity that are deeper than and different from those open to others. To make this move, you need to be able to look beyond your past and to integrate into your present the losses that arthritis has brought. Then arthritis can become a bridge, rather than a barrier, a bridge to new and different strivings for a satisfying life. Life satisfaction comes out of a mature creativity, in which people learn to accept themselves as they are. Satisfied people have a high tolerance for frustration and a clear perception of reality that allows them to both acknowledge and respect their limits.

Creating a new road map

Essentially, your quality of life depends on the priority you give to thinking over, experiencing, and exploring the nature of your arthritis and the changes that it brings. Individuals who are able to improve their quality of life are those who go with the “creative flow” of this process, while those with a poor quality of life describe themselves as “stuck.”

Think of it this way: Ensuring good quality of life is a little like finding your way around a new neighborhood. As you explore, you discover new paths and add to your mental map of the area. In the same way, you generate new mental maps as you struggle to find your way out, around, and through problem areas in your life. Using as signposts the quality-of-life markers discussed above, you will be able to create a new sense of meaning in your life and modify personally cherished beliefs and traits that no longer work. This opens the door to consideration of new behavior, inviting a happier, more satisfying quality of life in the presence of arthritis.

Last Reviewed April 1, 2015

Jackson Rainer is a Professor of Psychology and Director of Clinical Training for the Clinical Psychology program at Georgia Southern University in Statesboro, Georgia.

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