Quality of Life— What It Means, Why It Can't be Measured, and How It Changes
Quality of life dominates so many discussions in the health care community, I thought it wouldn’t be a waste of time to unpack its meaning. We all seem to know what it is, and yet so few of us claim to have attained it. Is it merely an ideal? Do you think of it in negative terms related to the onset of MS? Is it something you lost, something you never had, or something else?
Whenever I hear the term, I think of the movie THE MALTESE FALCON. The title describes a plot device in storytelling known as a MacGuffin. Its purpose is to advance the plot by providing the players an object of desire. The main characters in THE MALTESE FALCON pursue an elusive statue of a bird rumored to be made of solid gold. It holds some promise of happiness for each character, all of whom possess greed and a selfish, criminal disregard for human life as common traits. They travel to Africa, the Levant, South America, anywhere the trail leads them, only to discover that the bird is always one step ahead. The longer they fail to possess it, the more desperate and reckless they become. Finally, it comes in on a ship from Hong Kong and lands in Bogie’s office. When it’s revealed to be a fake made of lead, the promise of a better life shatters. In the final scene, Bogie holds the valueless fake while Ward Bond asks what it is. “The stuff dreams are made of,” Bogie grimly replies. But dream stuff encompasses so much more than a selfish pursuit.
Quality of life is subjective
We all can probably agree that quality of life is subjective and fluid. As our circumstances change, the balance of our lives shifts, causing confusion and frustration. Before we developed MS, we measured it by our personal relationships, career satisfaction, and financial security, among other things. We held certain expectations in each aspect. In a nutshell, we were generally goal-oriented. After the onset of MS, we thought of our life quality as being diminished from the many losses we suffered. Quality is negatively defined by such changes. But you might agree that we don’t do that for long. As we become accustomed to constant changes, we learn to more easily shift our focus to what is important in the moment.
Treating mind, body, and spirit
In a 2013 article by Forbes contributor IESE Business School, the authors observe that people with chronic illness experience an uptick of quality with acceptance of their physical condition. Quality is defined as “. . . not just the absence of disease but the presence of physical, mental and social well-being.” This partially explains why some patients that score high on the disability scale also report good quality of life. There are so many aspects contributing to a person’s resilience and attitudes. Medical research hasn’t yet designed a study that includes the multitude of those factors. It might not even be possible. The best we can do is work with an integrated health care team comprised of scientists and therapists treating mind, body, and spirit, helping the patient identify and maintain an effective balance.
We with chronic illness constantly redefine the concept called “quality of life.” Each of us interprets the events in our lives in unique ways. How we cope with MS is certainly an overarching influence on our perceptions and how we rate our satisfaction with our lives.
How would you rate your quality of life? Can you identify those things that will make the needle move up or down on the quality meter? I hope you’ll share your thoughts. Just as important, I hope you’ve found the resilience to go with the flow whenever the needle moves one way or the other.
Have you ever experienced any of the following financial struggles due to your MS?