Chronic Illness: Helping Friends and Family to UnderstandTrying to explain a chronic illness to friends and family can result in glazed eyes and that familiar distracted look. With acquaintances it is usually best to keep
explanation short and to
point. After all, it really doesn’t matter much whether they really understand. When family and friends don’t understand what you are living with, their reactions can take a toll on your self-esteem and add more stress to your life.
After 14 years of trying to explain my health problems (polycystic ovarian syndrome and hypothyroidism) to my family and friends, I know that some of them still think I am lazy, a hypochondriac, a drama queen, or simply nuts. I am keenly aware that what I eat, how much sleep I get, whether I exercise, and a myriad of other decisions influence how I will feel today and how my body will function tomorrow. I can’t count on having a certain amount of energy or plan how I will feel at any given time in
future. For healthy people who don’t need to think about these things it can look like a self-centered obsession.
Loved ones and friends may feel you are lazy when you are suffering from fatigue. They may be angry when your lifestyle changes interfere with their needs. They may feel that you focus too much on your illness. They may want to understand—but they have no frame of reference. To explain snow to a desert dweller is nearly impossible unless you can show them
frost in your freezer.
The following ideas will help you to explain chronic illnesses:
* Understand that these concepts are probably new to this person. Remain calm and avoid acting defensive.
* You may find it helpful to have your family read
“Spoon Theory” at http://www.butyoudontlooksick.com/spoons.htm. It is an excellent explanation of how an illness limits your resources. Healthy people do not have to make choices about how to spend their energy. They have more freedom to make personal and financial decisions.
* You may need to explain both large and small concepts. Try to keep
explanations simple. Having a chronic illness has likely forced you to learn more about your body than most people understand. Use simple language instead of medical terms. Try to compare symptoms to things everyone is familiar with, for instance,
fatigue that comes with
flu, nausea that comes with motion sickness, etc. Let them know it is ok to ask questions.