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Quality of Life--What It Means, Why It Can

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.

Constantly redefining

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

  1. Quality of Life: Everybody Wants it, But What Is It?, by IESE Business School, Forbes, SEP 4, 2013. www.forbes.com/sites/iese/2013/09/04/quality-of-life-everyone-wants-it-but-what-is-it

Comments

  • Julie
    2 years ago

    When my dad died of pulmonary fibrosis mom had made the decision to take him off the ventilator. He could not live without being intubated and was already heavily medicated. This is not a quality of life and we all knew it. He only lived 20 minutes without the machines.

    I know it’s not fair to compare one illness to another but you get the gist. Do we all have to come to the moment that we know we are past the point of quality of life or does someone else make that decision? My sister wanted to leave him intubated, I didn’t. Which one of us made the right choice? I told my mom she had been married to him for almost 60 years and she knew what he would have wanted.

    In the end, she made the right choice. Looking for papers after his funeral we ran across his final wishes. It wasn’t a legal document but at least mom knew she made the right choice, Exactly what he wanted. Never to be left to be kept alive by a machine.

    Maybe we should all make our final wishes to be known by friends, partners or family.
    What is the quality of life? I don’t think any of us can say for sure. What one thinks it is, another won’t. We had the benefit of my dad’s wishes in writing. I wouldn’t want the end of my life to be kept alive by a machine either. I have let my kids known this. They have watched me go slowly downhill with my MS and worry about me. I hope the decision for me will not be anytime in my future or ever!

  • Erin Rush moderator
    2 years ago

    Wow, Julie! What a tough situation for your family! I am so glad you have the comfort of knowing that you and your mother made the right decision for your father. You bring up a good point about making our final wishes known. Here is some information about the DNR (do not resuscitate) paperwork that you might find interesting — http://dp.ccalac.org/Policies/regs/Documents/DO%20NOT%20RESUSCITATE%20Form.pdf. With changes in healthcare and end of life care, it’s hard to say where the laws will be in the next few decades. Also, another important legal step can be appointing a trusted family member as your power of attorney, which gives them the legal right to make healthcare decisions for you, should you become unable to do so for yourself. You can read more about it here — http://www.caregiverslibrary.org/caregivers-resources/grp-legal-matters/hsgrp-power-of-attorney-guardianship/what-is-power-of-attorney-article.aspx. Thank you so much for sharing your personal experience on this very difficult subject. I hope good memories of your father help ease the pain of his passing. Best, Erin, MultipleSclerosis.net Team Member.

  • LuvMyDog
    2 years ago

    I was diagnosed with MS 35 years ago. 35 years ago I didn’t fully understand what that meant but I had a great neurologist who kept me informed and took very good care of me, I really admired him. By far one of the nicest people I have had the good fortune to meet in my life. So very disappointed when he retired, haven’t found anyone that could fill his shoes.

    In the first two decades of MS, my flare-up’s consisted of dizziness, eye problem, terrible fatigue. After that came the cog-fog, the speech problems, eye problems, gut problems, balance, mind boggling fatigue, etc…the list goes on.
    What to do, what to do?
    Well, nothing really. I was brought up to be a survivor. Whining and crying were not allowed, they got you nowhere.

    So, I deal with the problems and I don’t talk about them because people who are not plagued with MS haven’t a clue what it’s like and if I hear one more idiot say ….”oh yeh, I know how that feels, it’ll pass…” I’ll most likely say something ugly because I’m VERY outspoken.

    Yeh right. I’m not tired from a night at the casino or from taking care of a screaming brat, I’m wiped out because it was too hot and humid today and all I could do was sit or take a few naps, I couldn’t even do my dishes!!
    Quality of life…yup, not what it used to be when I was freakishly strong, athletic and ran from dusk til’ dawn, working, keeping up with my house, taking care of several of my rescue dogs and helping out friends with illnesses, basically on-call 24/7 .

    I’ve also found I respond in a negative way to my surroundings. I HATE any excessive noise and that includes the sound of people and their disrespectful brats, who are loud and disrespectful because of poor parenting and lack of discipline….not at all the way I was brought up.

    To me at this point in my life, that….is a BIG quality of life issue. Noise, the terrible decline of my neighborhood, I HATE it, plain and simple. I would love to move to a quiet area, fewer people, no kids, but so far, I can’t find any place like that. No place that I can afford anyway. So my quality of life at this point in time is….mostly depressing, not what I’d like it to be and there’s not much I can do about it.

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