Let Us Take the Stress Out of Talking to People With Chronic Illness

There are three of us who write together — Alice, Christy and Lillian. Collectively, we have rheumatoid arthritis, psoriatic arthritis, Crohn’s disease, gastroparesis, fibromyalgia, carpal tunnel syndrome, eosinophilic gastritis, acid reflux, bile reflux, Raynaud’s disease and depression. Essentially, we’re a cumulative hot mess. With all of these medical conditions, though, comes experience (good and bad), lessons learned, and the occasional bit of amazing insight. 

We’ve noticed recently that people seem to walk on eggshells around us. Here’s what we think about it:

If you ever Google “how to talk to people with chronic illness,” a bajillion and a half lists of dos and don’ts will come up. After reading those lists, are you uncertain about talking to us? No worries, we would be too. Those lists are basically saying, “Hey person, be super careful of what you say because you might really offend someone, but you go have that conversation because it’s rude not to.” Um, no. We have chronic illnesses and those lists still freak us out.

These lists assume we’re all the same. We’re not. Sure, some of those statements may offend certain people. Even though many lists include this as a “don’t,” we would love for you to tell us we look great. It’s even OK to tell us we look healthy. We work hard to be that way. Just because we feel like crap doesn’t mean we want to look like crap. We can’t imagine ever being offended by someone saying we look good. One set of rules will not cover everyone. Sorry if you thought it was that easy.

Keep in mind that we are people with chronic illness. Notice that “people” is in italics? Yeah, that’s because it’s the important part of that statement. We’re people. You naturally filter what you say based on who you’re with, whether it be toning down the swear words, avoiding topics like politics and religion, or keeping the conversation short. Being conscious of what you say to a person with a chronic illness is no different than being conscious of what you say to a person in general. Imagine that.

Good conversational etiquette basically boils down to one thing:

Don’t be an a**hole.

If you’re not being an a**hole intentionally, we won’t be offended. We get that you might not know a lot about our medical conditions. That’s OK. If you or a loved one don’t have it, there’s no reason for you to know about them. If you say something that could be insensitive, we may point that out so you don’t say it again. We will not, however, take it personally or be offended.

We understand that not all people with chronic illness share our view. We’re not trying to tell you how to talk to them, only how to talk to us. So don’t be uncertain or nervous about talking to us. You won’t make us uncomfortable. Two of us are GI patients, so it would honestly be super impressive if you could find a way to make us uncomfortable. We bet you $20 you can’t.

Also, bringing ice cream is always a good idea. You know, for good conversational etiquette and all that.

Follow this journey on Funny Bones.