You see your doctors, take your medications, have your Marfan syndrome features monitored regularly by all the right specialists. But you still face challenges every day; you don’t feel fulfilled. The Marfan Foundation is committed to helping you enhance your quality of life so that you can enjoy the life you are living despite your diagnosis. As we address quality of life, you will see that we are going beyond the medical challenges you may face to help you overcome other issues of daily living. In this blog post, Susan Leshen, LCSW, our senior director of patient and program services, provides an introduction to quality of life.
First Big Question – What is Quality of Life?
Quality of life is achieved by having the ability to work towards a goal. It is connected to the ability to be creative, resilient, and independent and to be able to relate to others. To put it even more simply, it’s about accomplishing our personal goals in the areas of life that we value.
Happiness, which is associated with quality of life, can also be understood as the fulfillment of goals, needs, and wishes in an area that has value to the individual. Happiness leads to increased success, better health, and rewarding relationships.
Life Satisfaction Means…
To be with my friends and family daily; watch Naomi live life and not let Marfan syndrome define her; and be there for families coping with the same struggles.
-Jamie Wise
Quality of life is, above all, a personal perspective. The goal for each individual is to understand and identify their needs, goals, and avenues for personal growth.
Philosophers have long believed that it is not our situation that makes us happy or unhappy, but our attitude toward our situation. To paraphrase Epictetus, we are disturbed not by things or circumstances, but by the view we take of them.
What is important to your life? What are your cherished needs, goals, and wishes? Have you attained them? Have you assessed your quality of life? If not, then this is the time to begin.
Second Big Question – What Does This Mean to Me?
The Centers for Disease Control and Prevention (CDC) has identified quality of life improvement as a central public health goal. According to the CDC, quality of life is related to both self-reported chronic diseases and their risk factors. Health is seen by the public health community as a multidimensional concept that has physical, mental, and social aspects.
As medical and public health advances have led to cures and better treatments of existing diseases and delayed mortality, it is logical that those who measure health outcomes begin to assess the population’s health not only on the basis of saving lives, but also in terms of improving the quality ofthose lives.
The World Health Organization concluded that there are five dimensions by which to measure treatment outcomes: biological and physiological variables, symptom status, functional status, general health perceptions, and overall quality of life. These factors are not independent but may be equally connected.
Other studies have identified increased levels of chronic pain, poor performance in school or on jobs, increased risk for respiratory and heart related illnesses, and delayed recovery from surgeries as results of low life satisfaction.
In the simplest terms possible, your mindset will directly affect how you feel.
The Third Big Question – What Can I Do?
The path to increasing your quality of life starts with identifying what is really important to you, your cherished goals and needs, and the areas of your life that are lacking in substance or fulfillment.
Yes, this is easier said than done.
Life Satisfaction Means…
Getting up every day and making a positive contribution to society.
-Susan Delgardo
Most of us have hidden our desires away on a shelf in the back of the closet where they will never see the light of day. Why? Because we have fears: of failure, of being thought of as selfish, of self-reflection. We also do this because sometimes the daily pressures of living with or without a chronic ailment have beaten us down and we do not believe that a life filled with satisfaction and happiness is in our future.
This blog is not meant to be a quick fix but instead it is the beginning of a dialogue for making and confronting the changes needed to enhance your quality of life. We hope it helps to initiate discussions in your own home, with your immediate and extended families, and with your doctors.
The steps on this path will sometimes seem treacherous, but the end result is worth the effort. It begins with conversations, being aware of your life satisfaction and treasuring it, discovering what’s missing from your life, as well as joining The Marfan Foundation and others with related disorders as we travel this path together.
Susan Leshen, LCSW, is the senior director of patient and program services and volunteer leadership for The Marfan Foundation. She has more than 25 years of social work experience with people of all ages.