Invisible Illness: A Name Coined by Someone Who Didn't Have RA

“Invisible illness.” There’s been a lot of talk about this increasingly inaccurate phrase lately. Many of our community members tell stories about how their rheumatoid arthritis affects their daily lives when dealing with people who have no idea how the disease actually works. I know, no shocking news there, but how it ever got the “invisible” moniker, well, I have some ideas. Still, though, RA, or any chronic illness really, is about as invisible as an elephant in a pink tutu. In a tiny room. Made of glass.

Who coined the term, "invisible illness?"

Sometimes I try to think about the first person to call rheumatoid arthritis and it’s ilk by the name “invisible illness.” I figure it went something like this – a bunch of doctors in some sort of board room, smoking big cigars and wearing suspenders, while a secretary in a mini-skirt pushes around a trolley cart with whiskeys on the rock. Whiskey on the rock? Whiskeys on collective rocks? Whatever. The doctor at the head of the table then says, “you know, this illness rheumatoid arthritis, these people never seem to be as bad as they say when they come for an exam.” Then another doctor goes, “quite right Charles, I’d dare say we should call it the ‘invisible illness’ just for a laugh!” Then they all chortle and drink Dewar’s and smoke Cohibas until it’s time to go to the bar at 5pm.

Now, yes, I may have let Mad Men influence my vision (amazing show btw), but I am 100% sure that the base details are accurate. The name was definitely coined by someone who: a. didn’t suffer from the disease and b. probably came from a time when doctors cared little for what their patients actually felt and said. So… last Tuesday.

My RA is always visible

Of course, things are better now than they were decades ago in the whole “actually listening to patients” department, although admittedly, some days it doesn’t feel like it. It still makes me wonder if the name would have caught on today because everyone I talk to who actually has rheumatoid arthritis says their disease is not invisible. It’s visible. Visible like a brown toupee on a grey-haired science teacher. Even on the so-called “good days” (‘good’ is an extremely generous adjective), it doesn’t feel like the illness is invisible. It’s more like “slightly less obvious” or even “not as overtly excruciating as it normally is.” I’ll admit that doesn’t have the same ring as “invisible” but it’s so much more accurate.

Shifting my perspective

So, what do we do? Well, I’ve come up with a solution. I know how to make the name accurate without changing anything at all. All it requires is a shift in thinking because in a weird, ironic way, the name “invisible illness” is exactly accurate, in at least two separate ways! First, if you are a “healthy” person looking in, “invisible” perfectly describes what you probably think when you see us on one of our “slightly less obvious” days.

This belief becomes especially obvious when we park in a handicapped spot and then hop out of our car without a wheelchair, cane, or another assistive device. Sure, we know our hip hurts like a cryin’ banshee and our shoulder is about to sublux out of its own socket and we just hope it doesn’t happen while we are getting the 12-pack of soda off the shelf. But that “healthy” person giving us the stink eye in the lot doesn’t see that. All they see is a healthy-looking individual daring to park in a spot reserved for people that match what they think “disabled” and “chronically ill” should mean. How dare us. Still, though, in this way of thinking the word “invisible” does apply.

A disability doesn't look the same for everyone

Secondly, and on a much more macro level, the “invisible” part of “invisible illness” really does describe how the world at large views most people with RA and indeed chronic illness overall. Colleagues, friends, family, and even doctors have, for years, told people with RA (especially those of us who are sero-negative with no blood indicators) that our pain may be “in our heads,” and possibly, things “aren’t as bas as all that,” and maybe we “need to take some naproxen and shut up” (all real things said to me).

It's sadly true – most of the world at large has an image of what disability and illness look like and if your disease doesn’t adhere to the depiction they’ve created using an amalgam of TV shows, social media, the Internet, and just plain old stereotyping, then you must be making it up and are likely just a whiney hypochondriac. It amazes me because if someone says, “oh I have cancer,” you usually don’t see the actual cancer. There isn’t a big letter C that appears on their forehead! You just take someone at their word. So why is it any different with RA and chronic illness?

In the most dreadfully ironic way, the moniker “invisible illness” is tragically accurate. We are invisible to many people, but I’m 99.9% sure that accidental accuracy is purely coincidental, as the name is supposed to mean we have some days when it’s like we are as healthy as everyone else. At least that’s what they tell us. Now, if someone would just make my RA actually listen…  Talk soon.