by Jackson Rainer, PhD
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.
Last Reviewed on August 3, 2010
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