Monday, September 8, 2008

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 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.

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


Amanda Kimberley said...

Awesome blog entry! I often feel that my family and friends really don't understand that I'm always in constant pain.

I'll have to check out that song "Everybody Knows About Me". Thanks so much for sharing this!


cinderkeys said...

Thanks! I hope you like the song.