A row of brown paper grocery bags lined up. All of them have a vintage smiley face on them. The middle bag is upside down with two legs sticking out. The smiley face on that bag is upside down and warbly and distorted.

"Invisible Illness": The Worst Name Ever

Invisible illness. I’ve always hated that term. Why? Because illness is always visible to someone, and in most cases, it’s the person who has it. Rheumatoid arthritis (RA) is number one on that particular hitlist.

The term, “invisible illness” applies to everyone else who sees you, and it always makes me ask the question: “Why are we defining our illness according to what people who don’t have it experience?”

What does invisible illness mean?

There are a million examples of rheumatoid arthritis being an invisible illness and just in case you aren’t familiar with the term, let’s go over it.

Basically, it means that there are days in our illness where it looks like - to the outside world - we are potentially healthy. Either that, or we look like garbage but not so crappy that we fall outside the normal range of garbage-ness that a healthy adult human would appear to be.

If that doesn’t describe rheumatoid arthritis and many chronic illnesses in general, I don’t know what does. There are good days when we can shop in the grocery store unremarkably and bad days when we have to stay in bed, errr, fully remarked.

A philosophical conundrum

There’s a weird philosophical conundrum about the whole “invisible illness” thing that I only realized as of late. It has the same sort of vibe as the whole, “if a tree falls in the forest…” thing. It goes like this.

When you have a chronic illness, it stands to reason that you are only going to go out if you are feeling well enough to shop, run errands, or hang out. So, because you are feeling well enough to do those things, then chances are you are going to look less ill.

Conversely, if you are feeling bad, you are much less likely to go out of the house or you may not even be able to. This means that no one is going to see how sick you really “look” on those days.

My point is that people only see you when you are feeling and looking well precisely because you are feeling and looking well. So couldn’t every illness, rheumatoid arthritis included, be considered “invisible” since people are rarely seen on the bad days?

Does chronic illness have to be seen to be real?

Alright. Now that we’ve waxed poetic, it’s time to get down to the real nitty-gritty: What it’s like when you do go out on those good days? Those days when people treat you like every chronic illness and disability has to be seen to be real.

This especially comes into play when parking in the handicapped spot. Oh boy, if I had a nickel for every time I’ve dealt with guff for parking in a handicapped spot. Apparently, there are unwritten rules for parking there.

The unwritten rules of handicapped parking

First, you can’t own a nice car and be disabled – you have to drive either a windowless panel van or an '86 Chevy Astrovan. Otherwise, you get the dirtiest looks from people if you dare step out of a late model coupe or sedan.

Second, you have to make sure any and all disabilities are visible and exaggerated before you get out of the car. If anyone has ever seen the Monty Python skit “Ministry of Funny Walks,” it’s that level of an obvious limp that I’m talking about, like a drunk three-legged horse.

Finally (and this applies more so if you are younger and disabled), you must give up the handicapped spot to any and all elderly folks who need to use it, whether they have a disabled placard or not. I was informed of this by a particularly irate elderly couple (without a placard) who claimed that the spots were for, “older people who need them,” and young people with chronic illnesses and disabilities were at the bottom of the list.

Staying on the good side of good day

So, now that you know the unwritten rules for parking in the blue spot, you can take them and post them...right out the window.

If you have a placard, you are just as entitled to park there as anyone else who has rheumatoid arthritis or any other disability, even if you are having a good day.

Why? Because you want to keep having a good day and walking two miles to get to the store entrance isn’t conducive to staying on the good side of “good day.”

Invisible illness is a misnomer

This is why I hate the term “invisible illness.” It gives people the wrong idea on so many fronts. Even if they know you have a legitimate disability or illness like RA, they think that just because they can’t see it, it means it isn’t there, which we all know is utter, weapons-grade, baloney.

Even if you aren’t having a bad physical day, there’s still depression, anxiety, fear, insecurity, and a host of other issues that don’t’ have physical manifestations that come with chronic illness. Sometimes you have brain fog or lack the emotional energy to deal with others that day.

No matter what the symptoms, there is rarely a 24-hour period when you feel nothing at all, and that’s why “invisible illness” is such an insidious misnomer.

Change how we talk about chronic illness and disability

So, what can we do? Well, for starters we can stop using the term.

I think, instead of “invisible illness,” we can use terms like “intermittent illness” or “varying illness.” Terms that don’t conjure up images of being without RA, terms that instead indicate some days are good and some are bad, but it’s always there. Talk soon.

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