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.’”
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.”
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.
Last Reviewed on August 3, 2010
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