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“The Communication Syndrome”

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This was a phrase a friend of mine used to describe what it is like to try to communicate with people about having a chronic illness.

I think it’s brilliant.

It can be very hard to know how much to tell people, when to tell people, if you should tell people, which people to tell and if it’s worth it to even mention it at all.

Beyond that, when people already know about your disease and ask you how you are, you have to determine if they are asking out of obligation or out of real concern.

You must know your audience at all times. This can be exhausting.

If you guess wrong and start to tell someone how you really feel and see the curtain come down on their face as you tell them, then your feelings are hurt. It’s not a fun feeling when this happens…to feel discounted…to feel you’ve bored someone with your little problems.

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Then there are the times people ask how you are but you don’t feel like talking about it. So you just say that you are fine even if you aren’t.

Mostly though, what I know is that people don’t care or if they do, they don’t care that much. So, I have found it best to keep it simple or as simple as I can. Usually I say something like. “I’m okay. Thanks for asking. How are you?”

It always amazes me when you turn it around and ask someone how THEY are how quickly the conversation suddenly becomes interesting again. Generally people really only want to talk about themselves any way and only ask you how you are to be polite.

Occasionally when asked how I am if the audience is right, I’ll say something like, “Do you want the answer I usually give or do you want the truth?” But even then depending on who I am talking to, I may still give the “usual” answer that I am okay even if I’m not.

Like I said, you must know your audience at all times.

Learning to communicate with people once you have a chronic illness isn’t easy. It’s one of the things no one clues you in on and you find out the hard way that since most people cannot relate to you anyway, they generally shut down or they become embarrassed because they don’t know what to say to you. Then you feel uncomfortable because the last thing you wanted to do was make someone else uncomfortable.

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And let’s not also forget what happens when you finally do feel brave enough to tell people about your illness. They have the potential to start treating you differently…like you might break or something or even like you are now a leper…a freak…a weirdo…or worse yet…a fake because remember most chronic conditions are “invisible”.


You cannot see the condition of my lungs. You cannot see how swollen the lymph nodes in my chest are. You cannot see my joint pain. You cannot see my bone pain. You cannot see my constant low grade fever. You cannot see my fatigue. You cannot feel my muscle pain.

Some people start to act like they can catch your chronic condition. That’s always fun…watching people physically step away from you.

So that’s why I think the term “The Communication Syndrome” is brilliant…because a syndrome is defined as an affliction, a sickness, a disorder. And communication does become disordered once you have a chronic condition. And you suddenly bear all the responsibility to make your condition okay for everyone else when in fact, being the sick one, everyone else should be making it okay for you!

But they won’t most of the time so the burden rests with you to figure out what to say, when to say it or if you say anything at all.