This comes up a lot. Every time I meet someone new, there's always that point where they know that I have Crohn's, we've talked about it briefly, and they have a vague understanding of what Crohn's means. One day, we have a more in depth conversation about what Crohn's actually is and how I live with my disease. At some point during this conversation, my friend/co-worker/family member/ect. will express their fear of saying "the wrong thing."
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.
2) Sometimes, just listen.
I know, I know. I just finished telling you how you need to talk. The thing is, you will be given a lot of new, complicated information over the course of this conversation and if you're in your head trying to make sense of it all, you'll miss what I'm trying to tell you. So, just focus on really hearing my words. I promise, it makes the entire conversation easier for both of us.
3) Remember that this is my body we're talking about.
Okay, this one is kind of hard to explain. I think my point is that I'm sharing something deeply personal with you, and that puts me in a really vulnerable position. Just be mindful of that. Don't let it keep you from asking questions or expressing your curiosity, but at the same time, remember that disease is a way of life. My way of life. It is hard to talk about and pretty impossible to understand unless you're in the thick of it. Don't try to put yourself in my shoes, that won't work. I know this because I've lived without disease, and I've been around it my entire life. I know that there is no way to really understand chronic disease until you've had to live with it. Even then, it's not easy. This kind of leads into my next point:
4) Don't overly-sympathize.
Your first reaction when I tell you the story of how I was diagnosed, or how I have to take medication and give myself shots may be to feel very sorry for me. This is okay, but know that I don't feel sorry for me, and you don't need to either. (Okay, maybe sometimes, in my worst moments, I feel bad for myself. Guilty.) As I said, this is just my life. I'm not a hero because I have a disease. We all have things we deal with, mine is just diagnosable.
5) Don't compare that one time you had the stomach flu to my disease.
Just don't. It is not the same thing. The stomach flu sucks. I know. I'm not saying it wasn't awful, I'm saying it is just a completely different thing from my disease. Apples and oranges, my friends. Apples and oranges.I hope this was helpful. At least a little. It's not complete, but it's a start. If any of you (whether you have a disease/disability or have been on the other side of one of these conversations) have anything to add, please do in the comments. I would love to read them.