This article originally appeared in the Fall 2024 issue of On The Level.
“Health-related quality of life focuses on the impact of health on a person’s ability to live a fulfilling life.” (Johns Hopkins)
We all want a good quality of life (QoL). We want to find purpose and happiness in our days. We want to be contributing members of our families, communities, and the world. It sounds like a manageable goal, but for those of us with chronic health challenges it becomes complicated.
When you have a vestibular disorder, very often your sense of wellbeing drops significantly. But as we learn new coping strategies and adjust our expectations, our QoL can improve again. At first, however, we may question our worth, our purpose, and our ability to function in this world.
What Is Quality of Life?
“Quality of life (QoL) is a multidimensional concept that measures a person’s sense of wellbeing.” (Physiopedia)
“While there is no shortage of textbook definitions, perhaps the most accurate meaning of QoL is the definition the patient provides when sitting across from their clinician.” (Teoli D, Bhardwaj A. Quality Of Life)
Very basically, QoL is our sense of life satisfaction. When we think about what makes life meaningful we consider a mix of variables, such as relationships, work life, economic well being, our physical and mental health, and religious or spiritual life. QoL is based on your own perceptions of how you are doing relative to your ideas of how you want to be doing. Which variables are important differ for every person and every culture. These variables may actually change throughout your life.
When we are talking about chronic health conditions, QoL is still about our whole sense of wellbeing, but it is now being mostly affected by health concerns. Our happiness and security and sense of self change when we get sick. Our QoL may take a tumble. This is normal as we wrestle with new symptoms, treatments and expectations.
QoL is not static, even for people without health challenges. As we go through life our QoL fluctuates and adjusts constantly. When you have a vestibular disorder, QoL also has a major impact on your sense of self or self-worth.
Why is Quality of Life Important?
“The quality, not the longevity, of one’s life is what is important.” – Martin Luther King, Jr.
It matters how we view our lives. Apart from what doctors, therapists, family or friends think, it matters that we find our life worthwhile and satisfying. Assessing and being aware of our QoL can help us find paths to increased satisfaction and avoid further decreases in happiness. QoL is important because we are important.
In addition to noting medical measurements like hearing, balance, pain, and disability, our healthcare providers also need to know how we are doing psychologically. How are we coping, learning, adjusting, and joining life again? In their efforts to treat the disease, they also want to know its impact. And, it’s important for us to know that they care about the human side of things, our experience, from our point of view.
How Do Healthcare Providers Measure and Use QoL?
“The quality of your life is directly related to how much uncertainty you can comfortably handle.” (Tony Robbins)
It’s likely that at some point a doctor’s office or physical therapy clinic has asked you to complete a questionnaire that assesses your “quality of life”. While not all assessments will look the same, they are measuring how you judge your functioning and life situation to be. Doctors are basically asking, “How are you adjusting and coping?”
There are different approaches and opinions on how to do this type of evaluation. Some professionals that study life quality believe it’s important to objectively measure across several categories, such as relationships, physical health, socioeconomic circumstances, etc, and assign numeric values to answers that can be compared across populations. Others believe it is a subjective measure of how a person describes their satisfaction with those categories, not to be compared with others, but to stand alone as a personal assessment. And then, finally many believe an assessment that combines those two approaches is the most accurate.
One problem with these questionnaires is that every one of us comes to them with different ideas about what the questions mean, using our cultural, educational and experiential backgrounds to determine our answers. Another flaw in the process occurs because people generally will compare their lives, then and now, causing their QoL score to be lower than it really is.
When you encounter a questionnaire that is asking you how you are coping or functioning or feeling about your situation, pause for a moment before launching into your responses. Don’t automatically start comparing how you are feeling about life in relation to life before your illness. Really stay in the moment and respond according to how you are doing given your current circumstances. That will be key in helping your provider, and you also, to understand your QoL status.
There are many different assessment tools out there – some have counted hundreds, so it’s hard to know which one you may encounter. This article has a description of the most commonly used. Some people consider the Dizziness Handicap Inventory (DHI) a QoL measure for people with vestibular disorders.
The Good News
“When we accept our life as it is, without judgment or fear, not even the horror of a declining body and loss of autonomy can deter our purpose.” (Liberation of Being by Dr. Dylan Shanahan, as introduced by Unfixed Media.)
Quality of Life is not an absolute score. It is a subjective assessment relative to our situation, attitude, and ability to accept change. Our quality of life can improve, no matter what our situation.
Once you begin accepting your condition and finding ways to function in life again, your QoL will increase. Your expectations will change and your desires will change. Once these balance out with your abilities, QoL goes up. You can reframe your role in the world.
A Key Element in QoL
“Good, warm, connections to others keep us physically stronger and our brains healthier. Relationships are stress regulators.” (Robert Waldinger, Ted Talk)
No matter what our diagnosis or symptoms, confronting a chronic vestibular disorder often leads to increased isolation. It’s understandable that when we struggle to move and be in the world, we need to focus on ourselves and distance from others. It’s a natural reaction.
And yet, this isolation keeps us in constant stress and wears away our sense of well-being. A key to increasing our QoL is committing to keeping, or forging new, connections. These don’t need to be numerous or deep relationships. It doesn’t need to involve difficult social situations. Greeting neighbors, a quick phone call with a family member, remembering important milestones, or joining a VeDA Support Group, can all help us stay connected.
As we work to increase our life satisfaction, it’s crucial to base our judgments on our current circumstances, not on the past. If we are constantly comparing ourselves to how we lived prior to vestibular symptoms, things will look bleak. Those of us who can shift gears, and find abilities and meaning, even with challenges, have a higher quality of life because we perceive that we do. If you perceive your life as being meaningful, it is.
Article by Karen R Mizrach
