Tuesday, September 09, 2008

The Invisible Illness Week Post: What’s in a Word?

I’m happy to participate in Invisible Illness Week as a guest blogger and seminar presenter this year, and have been thinking a lot about the term “invisible” a lot lately. (What can I say? I am a semantics dork. But you already knew that.)

After all, it’s the word “invisible” that sets this whole movement apart, that makes an enormous difference to the many, many patients who live with diseases they feel but others cannot see.

Though the absence of outward physical manifestation of illness in no way negates the existence of illness, the world doesn’t always work like that, and that’s where the stories so universal to the invisible illness experience originate: the stares and comments when a “healthy-looking” person uses a handicapped placard; the judgments and whispers in stores or other public places when people do not move as quickly or efficiently as they look like they should be able to; the insinuations patients are lazy or malingering because they are not cured and “don’t look sick.”

This is the part of invisible illness that is challenging, these preconceived benchmarks of what healthy and sick look like that are impossible to meet, these public expectations that are harder to reach when many physical complications stand in the way. I know I’ve felt uncomfortable when I’ve had to walk slowly because of adrenal fatigue or when I’ve had to take the elevator up one floor when I’ve had a respiratory infection and haven’t been able to move enough air to climb stairs. I don’t want people to think I am simply out of shape, or too lazy to walk up a flight of stairs.

(And yet I assume they are noticing or caring, so really, whose problem is it?)

I wish it didn’t matter so much what the average stranger, however misguided or misinformed or plain old misanthropic, thinks or assumes, but it does. Who wants to be judged, criticized, or somehow invalidated?

But there’s more this invisible illness phenomenon, something I touched on in last year’s post on Seeing the Scope of Invisible Illness--the cloak of invisibility has its benefits. It gives us a space to identify ourselves as something other than patients, a space where we don’t have to discuss, defend, or define conditions. We can be just like everyone else, if even for a brief spell. We can keep our problems and complications private.

I guess the timing of this post on invisible illness is particularly compelling for me because I’m caught in between the seen and unseen. I’m temporarily wearing monitors and devices that are very much visible, that lay bare to everyone around me what’s going on inside of me whether I like it or not—and it’s a definite “not.”

(And yet I am assuming they are noticing or caring, so really, whose problem is it?)

It’s the same feeling I’ve had when being wheeled onto an ambulance in front of a college dorm or being pushed through an airport in a wheelchair. Feeling that vulnerable and exposed is, in my experience, just as uncomfortable as feeling criticized or judged for not “looking” sick enough.

So in the end, parsing out the implications of invisible illness leads me to another, equally powerful word:


It’s what we need from others when our reality doesn’t match their assumptions, and it’s what we need to remember to extend even when in short supply because, as we know too well, you never know the truth of someone’s situation from a sidelong glance.


Charlotte said...

Hi Laurie,
thanks for writing this, I have a few thoughts but I'm not having a very coherent day so please forgive me if I say anything stupid.

I've been aware for a while that I sometimes use a walking stick as much as a badge to say 'I'm ill' as a physical support, I take it places I don't really need it. And yet, given the choice, I'll leave it behind when I go out with friends or dump it in a corner, and pretend to be 'normal' for a few hours even when it costs. I've also felt vulnerable when being pushed around, but it's a control thing for me as much as a matter of perception - I started using a powered chair during a bad patch a couple of years ago and was surprised how quickly I got used to it. I'm a speed freak, which helps :) I still feel vulnerable using it out in traffic, but I think that's a more practical issue of not being able to jump out the way of bad drivers.

One final thought: nothing else has got me as many dirty looks as parking in a disabled space, unpacking a wheelchair from the car and then sitting in it...

Anonymous said...

A fantastic article!

I know exactly where you are coming from. I have recently started to have to use a cane and I hate having such an visible symbol of my illness.

On the other hand, the cane does say, "Give me space and room" so that people won't get upset when I walk slowly or look at me oddly when I walk into walls (okay, they probably still do, but at least they don't think I am drunk).

One thing about having a chronic illness is that every day is a surprise, you never know what your body is going to do or not do.

Unknown said...

Laurie, this is great. Such a pertinent issue for so many of us.
I used to wear lots of braces and joint support to help me get around and stay involved in sports when I got sore and stiff. LOTS of people kept telling me I just shouldnt be active. Well that's just a GREAT solution, isnt it?
I've taken to wearing a medic alert bracelet for Celiac disease- which is not really necessary, but its a nice reminder and validation that I too, in a TRULY invisible illness and process of recovery, get an outward manifestation that reminds me of why I fought for 13 years for a diagnosis. and can share that with people when they ask what that cute tiffany's bracelet is... fashion medic alert jewelry :-)

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