Trying 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 the explanation short and to the 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 the 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 the 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 the “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 the 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, the fatigue that comes with the flu, nausea that comes with motion sickness, etc. Let them know it is ok to ask questions.
* Explain that you don’t show your worst symptoms to the world, when they see you it is usually when you are feeling well enough to go out, not when you are feeling lousy and need to stay home. You may not seem to be sick because usually see you when you are feeling well.
* Clarify that your illness takes an emotional and financial toll as well as a physical toll. Explain that it takes time from your schedule to deal with symptoms, medical appointments, lifestyle adjustments, etc. Let them know that support makes it easier to deal with the symptoms, but that there may still be times when you are depressed.
* Let them know that you have good days and bad days. Help them to understand that sometimes planning ahead is difficult.
* Make it clear that your illness does not define you, even when it influences the choices you make.
* If after doing your very best to explain your illness to your friends and family they still aren’t supportive, accept that not everyone can understand what you’re going through. Be patient.
* Finally, if you can not find the support you need within your circle of friends, join a support group or find other forms of support such as a life coach who specializes in coaching those with chronic illnesses. Social support is important in helping you manage your illness and in maintaining your emotional health.
