I totally understand. It's not an easy subject and we aren't really equipped with the tools to speak about disease until we are forced to figure it out. So, don't feel like you are alone. I'm right there with you. I work everyday to figure out the most effective way of speaking about my disease. Also, don't ever worry about offending me. Now, I can't speak for everyone with a chronic illness here, but I promise you, I am just thrilled that you are expressing interest. If you say something "wrong," I'll let you know. I won't throw a fit. I certainly won't get angry at you. I'll just offer you an alternate phrasing or conceptualize your statement in a different way. Not a big deal. Actually, I almost think these moments are the most important parts of these conversations because they force both of us to define the most useful language for the discussion of disease.
So, here are a few basic guidelines to use when talking to your friend or loved one about their chronic disease:
1) Be honest.
I know, this probably goes without saying, but it's important. And I'm not just talking about what you say. Be honest about any emotions you might have during the conversation. If something completely freaks you out, scares you, confuses you; say so. Chances are, I've been through the same emotion and I can help you identify why something frightens or confuses you and we can deal with it. Don't feel like it isn't your place to feel something about my disease. You will feel something, and it is okay to let me know when you do. People sometimes forget that while a disease may manifest in the body, it effects you emotionally as well. It's just as important to talk about the emotional toll illness takes as it is to talk about the actual disease.Read more »