Monday, September 10, 2007

Seeing the Scope of Invisible Illness

Today kicks off National Invisible Chronic Illness Awareness Week, making it the perfect time to tackle the realities of living with illnesses that aren’t obvious to the naked eye. This year’s theme is “Living with an Invisible Illness Feels Like a Roller Coaster—Help a Friend Hold On!”

As someone with many different invisible illnesses, I find this theme compelling. On the one hand, it implies that this kind of life can be difficult and that patients need support and understanding—very true. Yet it isn’t as simple as that. The roller coaster metaphor immediately conjures of memories of white-knuckled ascents up steep hills and the rush of relief that follows. These highs and lows, the white-knuckled anxiety and the carefree moments, they are all part of invisible illness.

But You Don’t Look Sick
You knew I was going to start here, didn’t you? That’s because of all the issues tangled up in this discussion, this is the most obvious and probably most relevant. Why even bother having a National Invisible Illness Awareness Week? Because when you’re sick and there are valid reasons why you can’t do something the way you want to or are worn out or need help and you look otherwise healthy, that disconnect can cause big problems.

If I don’t look sick, then I must not be sick. If I don’t look sick, then I shouldn’t need to take the elevator when I am carrying a heavy bag and four flights of stairs seems like it would take way more oxygen than I can get. If I don’t look sick, then I shouldn’t have to re-arrange plans to accommodate chest PT sessions, or quietly leave the dinner table so I can cough without making a scene.


Similarly, people with serious illnesses who do not “look” disabled shouldn’t need handicapped parking placards, or people who are young and dress well and wear make-up couldn’t possibly have a life-threatening or life-altering disease because truly sick people are only found in hospital beds, wearing faded johnnies and cracking wan smiles, and they certainly don’t look like normal people. I know enough people with enough invisible illnesses to know that this kind of thinking happens all the time.

This is the frustrating, anger-inducing part of the roller coaster metaphor, the one that quickens my pulse and flushes my face. I’m not asking for or expecting understanding from these people. I don’t really need it, and I’m not expecting miracles here. But there are times when I just want them to keep their preconceived notions of what sick looks like and their judgmental indignation to themselves.

Escape, Sweet Escape
I’ll be honest, there are lots of times when I am glad that whatever is wrong with me is largely undetectable on the outside. Sure, it can be isolating to feel like crap and slog through the day, trying to be “normal” and feeling so far from that. But there is a very real upside to this isolation: Escape.

Remember that rush of relief when the stomach-churning drop is over? That’s what I’m talking about. “Carefree” is not often a word associated with illness, but I’d say “caring much less” is a big part of it.

If no one knows anything is wrong with me, then for a little while, whether it’s at work or out with friends or riding the train, I can suspend reality. Having chronic illnesses is only one part of who I am, but sometimes necessity dictates that it seeps over into the other roles I take on, too. I don’t want to always think about, talk about it, make decisions based on it, or be associated with it.

And luckily, I don’t have to. The public, non-patient persona is really important to me—and, I’d argue, anyone with any type of condition—because, quite simply, it allows me to define myself in so many ways that have nothing to do with illness. Illness is always there, obviously, but it’s in a back-seat role.

And Lastly, the Invisible Made Visible
There’s something else to uncover in this discussion, something that perhaps isn’t as obvious a theme as the first two: To the people who really matter (and the people whose opinions likewise really matter), there is no such thing as “invisible” illness.

My mother can tell just from looking at my eyes (Are they glassy and flat?) if I am having bad day. My husband knows from the tone in my voice from one single word—“hello”—if I am not doing well. Even at a distance, my father can tell from watching me take two steps how I’m feeling. My friends know the subtle difference between the “just me being me” cough and the “hmm, something’s brewing” cough, even if I’m not even coughing all that much or that loudly.

I know how important having that inner sanctum familiarity is. I can see the same signposts in the sick people I am closest to: the slackened gait of exhaustion, the subtle grimace of joint pain, the tempered tone of tiredness. To the people who know us best, there are always telltale signs, ones that no one else would notice. As long as we have people who can see beyond what’s seemingly invisible, we have what counts, and the ride seems so much more manageable.


Terry at Counting Sheep said...

Well said.

A chronic illness can be powerful stuff but it doesn't necessarily have to be defining.

Invisible illness can be "likened" to back pain or a migraine - if outsiders can't feel it, see it, or ever experience it, it's hard for them to garner empathy or understanding for what you are going through. It certainly doesn't make your experience of it any less real, but as you pointed out, it can provide you true cover to carry on with your life.

And thank goodness to have people who love you and care in your life. You are blessed.

wellspouse said...


Well said! "Invisible illness" -- there certainly is a need to expose that. My late wife had an internal form of scleroderma that was totally invisible. And a number of things wrong with her. Mostly she had fatigue, which is even less recognized than all the other possible symptoms.

And along with it goes the "invisible caregiver." And you guessed it, I'm going to say that of all family caregivers, spousal caregivers are the least likely to "self-identify" -- and of the two genders, men by far take the longest to recognize themselves as spousal caregivers. That I learned at a recent conference on Male Caregiving that I attended and spoke at.

So what's sauce for the goose is sauce for the gander -- throw off the yoke of invisiblity, not wanting to bother people, or not wanting to come out of the "illness" or "caregiver" closet. Let people know what you need! It works for both spouses. Spousal caregivers can visit the Well Spouse Association webpage, to find out about the support we offer.

Anonymous said...

Wonderful post. That's how it is with me and my hubby, mother and some close friends. They just know. With others that don't sometimes it's a way of pretending or playing a role that I'm fine and dandy! Sometimes when I feel like I can't move or the weakness is getting to be too difficult I want to shout to them that I'm sick, can't you tell?

Who's to know which is which and why is why? This is just a part of our lives. One that we deal with or hide from.

SE said...

Sometimes it is just to complicated to explain. When I emailed my friends to tell them that I wasn't going to have open heart surgery, they almost all said, "hooray, you don't need surgery."

When I told my support group, they said, "oh, we're so sorry you aren't having surgery," because they understood that the decision wasn't based on "need" --it was based on results. And that surgery would not/could not make me better.

Very few people get it. It doesn't make sense to most that major surgery could be a good thing.

Rachel Emma said...

Hi Laurie,

I just wanted to say Hi, my name is Rachel Emma and i have just started reading your blog, i also have a blog which is about my cancer, i've had cancer for six years now and your last post really touched home with me. I have a disabled badge but i look "normal" so people give me looks thinking there is nothing wrong with me.

Take Care,

Rachel Emma

j said...

I had no idea it was National Invisible Chronic Illness Awareness Week, and that's sad since I have chronic pain and all and I really should have known.

I could relate to everything you said, and it's so refreshing. So I've added you to my blogroll over at

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