Chronic Illness and Happiness: Finding Meaning in Everyday Life
At the annual meeting of the American College of Rheumatology (ACR) in San Francisco on November 12 2001, I had the opportunity to hear a thoughtful keynote address from Dr. Charles H. Christiansen, EdD, OTR, from the University of Texas Medical Branch in Galveston.
The speaker began by making a confession. Having submitted his presentation about six months earlier with the title, "Chronic Illness and Happiness: Why Everyday Function Makes a Difference," he had come to realize that he was not particularly comfortable with this title. Two of the words were somewhat problematic, he explained. The first is happiness, which is not only hard to define, but most likely not taken very seriously--particularly in an academic setting like the one in which he conducts his research. Similarly, he found the word functionunsatisfactory, even though he noted that he has used the term in titles of textbooks. Function, he explained, somehow doesn't capture the meaning of everyday living.
So to begin his presentation, Dr. Christiansen took the liberty of replacing his original title with one that he found more appropriate: "Chronic Illness and Well-Being: How People Create Meaning and Identity Through Their Everyday Activities." And an apt title it was. He covered a wide range of topics, from a historical overview of measures of health and well-being, to an analysis of the factors that play a role in quality of life.
According to Dr. Christiansen, the concept of doing is an essential part of creating meaning in our lives; in fact, what we do is often closely tied to our sense of who we are. In meeting someone new, typically one of the first questions we ask in order to find out more about the person is, "What do you do?" When asking someone about how they feel, we typically don't say, "How do you feel?" but rather, "How're you doing?"
Similarly, healthcare has become focused on what we do--how well we function--in terms that can be measured objectively. Dr. Christiansen lamented the schism between the "art" and "science" of medicine as healthcare has become more scientific, more technical, and more evidence-based. Said Christiansen, "We need to think about other ways of measuring health and illness if we're serious about wanting to balance the art and science of healthcare. We can quantify, we can observe through imaging, we can do clinical tests, and we can compare those tests with normal values. But are those the only outcomes we have an interest in achieving with our patients?"
Christiansen noted that a more holistic and all-encompassing view of health is not a completely foreign concept in the healthcare field. Even the World Health Organization defineshealth as:
The state of complete mental and physical and social well-being, and not merely the absence of disease or infirmity.
This definition suggests a diverse range of factors that make up an overall picture of health. However, Dr. Christiansen acknowledged that typical healthcare models in the U.S. are nowhere near this holistic. Fortunately, the field of chronic disease and disability has made some progress in recognizing the need for a more holistic approach to how we define and measure healthcare outcomes.
"People are healthy or diseased in terms of the activities open to them or denied them," said Christiansen, quoting H. Tristram Englehardt Jr., MD, Ph.D., the author of a paper on the historical and conceptual roots of occupational therapy. In other words, people experience disease in terms of their everyday lives and the extent to which they are restricted from achieving the meaning and purpose that is important to them. According to Dr. Christiansen, "People can achieve high levels of satisfaction in life even if they have physical limitations in function, because people have a remarkable ability to adapt to circumstances in the service of living their lives.
"The message here, I think, is that health is not an endpoint or an outcome. It is a weigh station on the path to personal meaning and fulfillment. Health can be an enabler or a barrier. There are people with great physical health and no physical or mental limitations, but who are simply miserable in life…so quality of life in its broadest sense refers to health plus many other factors that are outside the realm of healthcare."
The World Health Organization (WHO) defines quality of life as:
Individuals' perceptions of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards, and concerns.
Individuals vary in the significance they attach to various life dimensions, and health status is just one factor that may play a role. Dr. Christiansen claimed that there is no consistent measure of quality of life from a health perspective; instruments used to measure "health-related quality of life" may assume that each symptom or functional limitation has a negative influence on well-being. He pointed out that this assumption discounts individuals' tremendous capacity to adapt to activity limitations.
In the field of social and action psychology, the concepts of quality of life and subjective well-being have been developed and studied for years. Studies have shown that "happiness" doesn't seem to correlate with many objective measures of environment or circumstances. For example, income, marital status, and a host of other environmental factors have no relationship to individuals' reported sense of well-being.
So what then explains happiness? According to Dr. Christiansen, there are a number of factors that research has revealed as being associated with happiness, including: self-esteem, sense of personal control, optimism, and being an extrovert. In addition, research has investigated the relationship between happiness and chronic illness and disability, revealing some interesting results. As we might expect, people who experience a great amount of pain tend to score lower on measures of happiness. The same is true with level of physical impairment; however, Dr. Christiansen noted, "It's not the physical impairment itself, I think, that creates that unhappiness…it's the inability to pursue activities that really are meaningful…."
There is no doubt that finding meaning is an important part of quality of life. Said Christiansen, "We all need meaning in our everyday lives. We all need to have a purpose and have a sense that we can actually act and make some progress toward that purpose. We all need to feel that our lives are valued and that they're justified. We all need to feel a sense of self-worth."
Dr. Christiansen argued that healthcare providers need to focus not just on enabling basic function in patients (i.e. moving the extremities) but to connect that movement to the things that are meaningful to them in their lives. He said, "Research supports the idea that people's well-being is found in the activities open to them and that give them meaning and purpose. Increasingly, the kinds of problems anticipated in the years ahead will be related to a lack of meaning and coherence in a world beset by consumerism, community alienation, and more recently by violence and even terrorism. I truly believe that just as persons with chronic disease and disability work to overcome their limitations in creating identity and meaning, so too must the world collectively work toward creating the conditions where identities can be created and happiness can be achieved. We in healthcare can help this process by devoting increased attention to the art of our practices--our softer side."
Dr. Christiansen emphasized that health is an enabler, not an outcome. Good health simply allows us to do the activities that bring meaning and purpose to our lives, and it is these endeavors that are the building blocks of life and of happiness. In closing, the speaker quoted Teilhard de Chardin, who said, "We are not physical beings living in a spiritual world; we are spiritual beings in a physical world." This lesson is one that Fibromyalgia sufferers would do well to remember. Though our physical worlds have been challenged and changed, we must still allow our spirits to soar.
