Politically invisible

Today is the last day of Invisible Illness Week. About two weeks ago I realized it was coming and thought, Already? Damn, I have nothing new to say.

Then I read a blog post arguing that the whole "invisible illness" concept was harmful and we shouldn't be using it to raise awareness anyway.

But I'm getting ahead of myself. For those of you who are just tuning in and have no idea what an invisible illness is, I'll quote from an older post:

What makes an illness or disability invisible? Two things. First, the people suffering with it often drop out of sight. Your friends don't hear from you for a while, figure you've lost touch for the usual reasons friends do, and have no idea that your chronic pain or crushing fatigue prevents you from leaving the house most days. Second, if they do happen to see you again, you probably appear perfectly normal. Your disease hasn't caused you to break out in scary hives or turn blue. The very fact that you're out in public probably means you're feeling/functioning better than usual.

So advocacy for invisible illnesses like ME, fibromyalgia, Lyme disease, and Gulf War disease should be pretty straightforward, right? Point out how those diseases exist even though they're hidden from view, and you dispel the prejudices of the previously uninformed.

According to Samuel Wales of The Kafka Pandemic, however, there are a number of problems with this approach. The one that stood out to me was this: healthy folks aren't prejudiced against all so-called invisible illnesses. We accept that diabetes is real, even though diabetics managing their disease don't look any different than anybody else. Patients with HIV/AIDS seem healthy much of the time, and no one accuses them of faking it. Appearing healthy, or being housebound and hidden from view, doesn't automatically mean people won't believe you.

The problem is that certain diseases are denigrated. Politically invisible.

While I'm not sure I'm convinced the term "invisible illness" is actively harmful, I like Samuel's alternative approach. When faced with a person who's skeptical about a disease that doesn't always make people look sick, respond with this: "Would you say that about AIDS?"

Good days, bad days, and invisibility

An invisible illness is one that isn't readily apparent to the people who don't have it. Two factors contribute to a disease's invisibility:

• No obvious signs. Sufferers don't use a wheelchair or crutches, don't exhibit hideous rashes or scarring, and generally don't "look sick."
  
  
• Symptoms go underground. Due to the illness, sufferers often can't leave the house. When they do, it's on a relatively good day, when they're feeling better. The friends and family who see them on those good days assume, wrongly, that the sick person always looks and functions that well.

As National Invisible Chronic Illness Awareness Week draws to a close, I'm posting "Good Days," a song I wrote about dealing with the misconceptions attached to a good days/bad days disease. Ron the Drummer and I recorded this live in his living room. You may need to turn the volume all the way up if you're listening on tiny laptop speakers.

Lyrics are below. Enjoy!




GOOD DAYS

Lyrics by Susan Wenger
Music by Susan Wenger & Ron Amistadi

When I got up late this morning
I could sense a change
Felt a little stronger
Could push a little longer
Accomplish something more

So I got dressed and fed myself
And hopped into the car
Drove it all the way down
To the nearest grocery store

You say I'm wasting my potential
Moving through this life too slow
You only see me on my good days
How are you to know

I've been losing so much daylight
Lying on the bed
Half awake and half asleep
Half alive, half dead

But now I walk among you all
Just breathing in the air
Grinning like a madman
On a double-doggie dare

You think I'm addicted to the drama
Playing all of this for show
You only see my on my good days
How are you to know


I could almost make believe
This feeling's here to stay
But I know from experience
My body's gonna pay

Well, none of your equations
Ever calculate the price
And I do not remember
Asking you for your advice

Today is gonna go down easy
Take it nice and take it slow
I am having me a good day
That's all you need to know

Out of sight, keep in mind

September 14–20 is Invisible Illness Awareness Week. If you have friends or family members with health problems, now would be a great time to give a call, see how they're doing.

What's that you say? You haven't spoken to them in a while because they never stayed in touch? All the more reason to call. Chances are they really do want to maintain contact with you. They've just been too overwhelmed by their illness and activities of daily living to manage it.

If you don't know what an invisible illness is, look over here.

Invisible, but not inaudible

"It's not so much what you don't know that can hurt you, it's what you think you know that ain't so."

-- Will Rogers

September 8–14 is National Invisible Chronic Illness Awareness Week. Its aim is to help healthy people understand what it's like to live with serious "invisible" diseases such as myalgic encephalomyelitis, fibromyalgia, multiple chemical sensitivities, lyme disease, Gulf War syndrome, and many, many others.

What makes an illness or disability invisible? Two things. First, the people suffering with it often drop out of sight. Your friends don't hear from you for a while, figure you've lost touch for the usual reasons friends do, and have no idea that your chronic pain or crushing fatigue prevents you from leaving the house most days. Second, if they do happen to see you again, you probably appear perfectly normal. Your disease hasn't caused you to break out in scary hives or turn blue. The very fact that you're out in public probably means you're feeling/functioning better than usual.

Chances are you've tried to explain what's really going on with you. But not everyone believes it: You could go back to work if you were willing to tough it out. You don't LOOK sick, so it must be all in your head ... or worse, you must be making it all up to get attention and a free disability check. So now you're not only stuck with constant pain, but you don't receive the support you'd get if you had diabetes, or multiple sclerosis, or some other "legitimate" disorder.

Want to combat this kind of prejudice? Here's something to try. Go to rescindinc.org/everybody.htm and download our song "Everybody Knows About Me." It's inspired by somebody who lived for many years with undiagnosed myalgic encephalomyelitis (also known as CFIDS, also known as "chronic fatigue syndrome"), but it could just as easily apply to many other invisible illnesses.

If you like the song, send the link to someone suffering from an invisible illness to let them know they aren't alone. Send it to someone who believes people with invisible illnesses are whining hypochondriacs. Send it to someone who doesn't quite get how it feels ... but would like to.

Everybody Knows About Me

Finding cures for these devastating diseases will cost billions. In the meantime, compassion is free.