By Kris McFalls
Patients with a chronic disease rightfully place a high value on relationships. Although we seek out love and support about our diseases from family and friends, that support is sometimes the most elusive, unmet need for us. Maybe the answer is to understand what it is that makes us feel loved and supported, and then to learn how to communicate that to friends and family.
While I am happy to discuss my boys and their disease, I am not one who needs or even wants to talk about my own symptoms and how they may affect my life. My boys will tell you that I am a fiercely independent woman who, like a two-year-old, wants to do everything myself no matter what the obstacles or the consequences. Truth be told, however, as I have “matured” (a euphemism for aging), I have discovered that a little bit of help, especially when I am not feeling great, can be a wonderful thing. Having support when I need it most makes me feel loved and supported. Still, even when I’m sick or recovering (as happened recently after hip surgery), I would much prefer that those around me figure out that I need help without my having to ask for it.
My boyfriend is a bit old fashioned. In his culture, the man is supposed to do the heavy work. He understands that I don’t like to talk about my symptoms and, quite frankly, they often scare him and make him feel a bit helpless because he cannot fix them. But, although he doesn’t really understand the medical stuff, he wants to be supportive, and he prefers to show he cares by doing projects and chores around my house. You would think that we are a match made in heaven, but as it turns out, there is still a piece of the puzzle missing. I am still bad about admitting I need and want help, and he is a typical guy who actually needs to be asked to help.
My recent hip surgery provided us the opportunity to increase our communication skills. I very much appreciate having a well-groomed yard. I also really like to mow my grass because I have a lawn tractor, which makes it fun. However, part of my lawn still needs mowing with a push mower. Even for me, the thought of using a push mower while still on crutches was a bad idea. Therefore, I was forced to ask for help. My boyfriend was happy to keep my lawn the way I like it because it makes me happy. I felt grateful, which got him some home-made chocolate chip cookies. Both of us felt appreciated.
Family and friends may not grasp the severity of a certain bodily symptom, but if we say I’m sad, scared, angry or depressed, maybe they can relate and empathize. Maybe the expectations are met by understanding our own needs and then communicating about the way others can help. If we are sad or lonely, maybe asking someone to sit and watch a movie with us will make us feel supported. If we say we are fatigued, having a grocery list to be filled, instead of listing off the things we can no longer do, will make both family members feel valued.
Perhaps friends and family may not need to understand all of the details of our disease for us to feel loved and supported. It may just be learning how to love and support one another despite our disease. How about you? Have you mastered the art of communicating what you really need from those closest to you?
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