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.

The price of a song, the value of a cause

Back when I first talked to the RESCIND guys about letting them use "Everybody Knows About Me" to raise money for ME awareness/research, the assumption was that they'd put a buy button up for $5 or so. Jerry, the webmaster, is the one who came up with the idea of letting people donate anything -- or nothing. He didn't believe people would stiff a charity. I thought this a little naive, but it didn't matter. The people who donated larger amounts would hopefully compensate for the freeloaders.

Yesterday, Jerry e-mailed me with the news that "Someone thought the song was worth $20!"

So cool. Of course, what he really meant was, someone thought the cause was worth $20. I'm pretty sure nobody would pay that much for a song, regardless of how good it is.

For fund-raising purposes, I hope RESCIND gets as many of those big donations as possible. But for awareness-raising purposes, I'm interested in the people who don't know or care enough about ME to part with more than the obligatory dollar or two. Maybe now I'm the one who's being naive, but I hope they listen to "Everybody Knows About Me" and come away with a better understanding of what it's like to suffer with the illness, and why it's not okay to dismiss it as "yuppie flu."

P.S. Thanks to all the readers here who donated. You rock!

Everybody Knows About Me: Released!

*drum roll*

"Everybody Knows About Me" -- the fully arranged, polished version -- is now available:

www.rescindinc.org/everybody.htm

Ron and I are letting RESCIND, a CFIDS/ME awareness site, use our song to help raise money for the cause. The deal is, you can download "Everybody Knows About Me" for free, and if you think the song and/or the cause is worth it, there's a donate button at the bottom of the page. You choose how much you want to donate.

(If you're wondering what on earth CFIDS/ME is, you can find a brief summary here.)

Eventually "Everybody Knows About Me" will also be available on places like iTunes, and hopefully other CFIDS/ME sites will feature it as well. But if you donate here, all proceeds go to RESCIND's "friend raiser."

More awareness for everyone

Thanks to everyone who linked back to either the CFIDS Awareness Day post here or "Everybody Knows About Me" on Myspace: I Learned Something Today, Molly.com, RachelCreative, Saving My Sanity, and Songs to a Midnight Sky. If you're interested in learning more about what CFIDS is like from someone who has it, RachelCreative wrote an essay about it for Awareness Day and linked to many others who did the same.

The responses to "Everybody Knows About Me" have been extremely positive. This is ... a relief. Anytime I write a song, I fret about making the lyrics as good as they can be, but the truth is that getting it wrong doesn't generally have substantial consequences. It's just a song, right? Writing about the devastating effects of a widely misunderstood illness I've witnessed but never experienced, that kicks the level of importance up a few dozen notches. Fail to convey some essential piece I was going for, and the song could do more harm than good.

Someone I know who has CFIDS did give EKAM a pass before it saw the light of day. Nevertheless, it's reassuring to get good reactions from people who don't know me personally.

A Song for CFIDS: Everybody Knows About Me

Today is CFIDS Awareness Day. To mark the occasion, we've uploaded a song called "Everybody Knows About Me" to our Myspace page. I wrote this from the perspective of someone suffering from undiagnosed CFIDS, though it could also easily apply to undiagnosed fibromyalgia, MCS/environmental injury, lyme disease, or many other so-called invisible illnesses.

You can find the song here. (Click the "Everybody Knows About Me" link if it doesn't start playing immediately.)

You may be thinking, "CFIDS? What the heck is that?" I'll answer that question and others in a handy FAQ format:

CFIDS? What the heck is that?

It stands for chronic fatigue and immune dysfunction syndrome. Symptoms vary from person to person, but commonly include:

• chronic, debilitating pain
  
• post-exertional malaise -- symptoms get worse after physical or mental exertion and require an extended recovery period
  
• flu-like symptoms, such as joint and muscle pain
  
• cognitive impairment, including problems with short-term memory
  
• crushing fatigue, which is not relieved by rest
  

Other common symptoms include cardiac arrhythmias, chemical sensitivities, food sensitivities, blurry vision, eye pain, irritable bowel syndrome, and a host of other conditions that are nasty in their own right.

CFIDS is also known by the name myalgic encephalomyelitis (ME). You've most likely heard it referred to as chronic fatigue syndrome.

Oh, chronic fatigue syndrome! Yeah, I've heard of that. A friend of mine says she has it, but every time I see her, she seems fine. I think she's just a hypochondriac.

Probably not. It's typical for sufferers to have good days and bad days (though a "good day" can still be pretty bad from a healthy person's perspective). If you see someone with CFIDS out and about, you've probably caught them on a good day. You don't see them lying flat on their back for the rest of the week, in the privacy of their own home, recovering from their trip to the grocery store.

I don't have CFIDS, but I have seen more than a few bad days up close. They're not pretty.

Is there a cure?

No. And at the rate research for a cure is being funded, it's going to be a while. In 2007, more money went to research on hay fever than CFIDS.

Damn.

Yeah. If you'd like to donate to an organization whose primary purpose is finding a cure, go here.

How else can I help?

Write your congressman. If you have a friend with CFIDS, make an effort to keep in touch. Your friend may not have the energy to call you, but he or she would probably love to hear from you. Listen. Sympathize. If someone you know makes a comment about how chronic fatigue syndrome is just laziness, don't let it pass. Explain that CFIDS involves serious pain and real impairment, not just greater-than-average tiredness.

Oh, and if you know anyone who might benefit from hearing "Everybody Knows About Me," send the link. But please don't send it to absolutely everyone in your e-mail address book. Spam is annoying, no matter how noble the cause.

Thanks for listening.