The 'Code Talk' of Someone With Rheumatoid Arthritis

“How are you doing today?”

“How are you feeling?”

“Is everything all right?”

I hear these questions all the time from friends, family and co-workers. They’re the questions people toss out as part of the banal small talk that makes social interactions….well, social. For most people those little questions are innocent enough, as are the answers that go with them. It’s an ice-breaker, a conversation starter or just a random comment to a casual workplace acquaintance. But, for people struggling with rheumatoid arthritis (RA), they’re a minefield – one that has to be navigated with caution and care.

I’m still pretty new to rheumatoid arthritis, at least in the sense that I was only diagnosed about six months ago. I’ve been dealing with the symptoms of RA for more than 15 years, but that’s a different (also long and uncomfortable) story. And, as an RA newbie, I had to learn the “RA Code” for how to answer questions – like the ones I mentioned above – that come up in the course of day-to-day conversation and small talk.

So, what is the RA Code? It goes like this… Someone asks you a benign question like, “How are you doing?” And then the code kicks in. First, you have to decide who it is you’re talking to. Are they a close friend, a family member or a casual acquaintance? The level of connection you have to the person asking the question has a lot to do with just how honest an answer you can safely give. If the person is one of a handful of truly close friends I have or a family member who is especially open, understanding and compassionate, then I can go full honesty with them and describe how I’m really doing. On any given day that response might range from, “OK, but my joints are little stiff and sore” to “It hurts so bad I wish I had a hacksaw so I could just cut my hands and feet off and be done with it.” And of course, there are variations in between. The good news with those really close friends and family members is that you don’t have to hold anything back from them, and there is a great deal of relief found in simply venting your feelings.

If, on the other hand, the person is not one of those intimate few who can handle full-bore, double barrel honesty, then I’ll typically give a somewhat vague answer that doesn’t really say much. “I’m doing all right,” is typically a safe bet. It answers the question without being too depressing and without encouraging any real in-depth conversation the other person probably isn’t interested in hearing in the first place.

Second, you have to try and determine how sincere the other person was in asking their question. Are they really trying to find out how you’re feeling today or are they simply trying to find a way to start a conversation, ask you a more important question or deliver some bit of news they’re holding onto? I have had people who fall on my “can accept full-bore honesty” list ask this kind of question in passing and I start unloading what a crappy day (or week) it’s been. About halfway through that conversation their eyes glaze over and they begin to look for ways to exit the conversation without appearing to be rude or inconsiderate. Unfortunately, I rarely pick up on those kinds of clues, so I just keep right on talking and venting away as my poor audience squirms and tries to find the emergency exit on our interaction. Reading those nonverbal cues that help determine if a person is actually looking for an in-depth discussion or just making small talk can help avoid the awkward and somewhat embarrassing moment of realizing you’ve been talking to a blank stare for the past 10 minutes. But, like I said, that’s something I have a hard time with anyway.

And finally, you have to decide just how open, honest and vulnerable you want to be that day. Because here’s the thing most of us forget: this is our illness, our body and our pain. And if we don’t want to talk about it today, that’s our business. Period. Anyone who has experienced the brutal, constant, maddening pain of RA can attest to the fact that there are days when we just don’t want to talk about how much it sucks, even with people we love and care about and who we know love and care about us.

The thing about pain is that it is a very private, very intimate, very personal thing. But having RA can, at times, take that privacy and shred it. Pain becomes a very visible, very public experience that we walk around with on a daily basis. And sometimes we just want a little bit of that privacy back. So, even if the person asking the question is on my “intimate few” list, and they are clearly sincere about wanting to know how I’m feeling on a particular day, they might still get a coded answer instead of actual honesty.

So once the three questions above are considered and answered, a response to the question can be selected and delivered that fits that particular question, that particular questioner and my particular mood at that moment. Some of my coded responses are as follows:

“Oh, I can’t complain.” This one is about as generic as it gets, and it’s one of the ones I use most often. It could mean anything from “I’m having a great day” to “I wish I could crawl under a rock and die it hurts so bad.” Either way, I’m not feeling up to talking about it and no amount of questions or concern is likely to change that, so move on.

“I’m doing pretty well.” This response typically means that for me, I’m having a normal day. In other words, my hands and feet are aching, but not to the point of being excruciating. There’s some stiffness, but I can still walk, type and do other basic tasks. It’s not great, but it’s manageable. I probably don’t feel like talking about it anymore either, and questions aren’t going to open me up unless they come from someone I’m very close with who I know cares deeply…and even then, it’s a coin toss.

“I’ve been better.” This response means I’m hurting more than usual. My fingers, toes, hands, ankles and knees are probably all hurting at the same time. It’s more than the usual background pain, and it’s tough to ignore. I can still function, but it’s difficult. The weather seems to play a lot into this, and I have these kinds of days more often when it’s about to storm outside or when a cold front passes through. This is probably the most honest of my coded responses, and it’s also the only one that indicates to people who I’m close to that they can ask more questions to find out more information.

“Today is a rough day.” This is my coded way for telling people to back off. If I give this response it means I’m hurting really bad and I don’t want to talk about it. These are the days it feels like a giant is trying to slowly pull my fingers and toes off my body while at the same time crushing them between two city buses. On days like this my temper is typically short, my mood is foul and I am a powder keg waiting for someone to get careless with a match. People typically aren’t expecting this kind of answer to such an innocent question, and it instantly makes them uncomfortable. You can see it in their face and body language, and the social interaction is often over shortly after this kind of a response is delivered, which is usually the intended effect. When I give this answer I’m not interested in conversation, questions, concern or anything else. I just want to be left alone.

So that is a brief glimpse at the inner workings of my RA code. From speaking with other people who have been dealing with and managing this illness for far longer than I have, I have come to believe that just about everyone who is an RA patient has a similar set of coded responses. This kind of hidden encryption built into our day-to-day small talk becomes an integral and necessary part of dealing with this illness. It’s a way to insulate not just others but ourselves from the full force of this disease. And, perhaps most importantly, it’s a way to take back some small measure of control from a sickness that can, at times, feel overwhelming and overpowering.

We want to hear your story. Become a Mighty contributor here.