Chronic Fatigue Syndrome, a Terrible Disease with a Terrible Name

You're crazy; you're lazy; you just need to try harder; it's normal to get older and feel a little tired. You've heard them all, haven't you? Well, you probably have if you suffer from the debilitating disease called Chronic fatigue Syndrome like I do.

It's really a nightmare come true, if you think about it. You get sick. I mean really sick. I mean so sick that you can barely stand, function or think. So you go to the doctor for some help, some tests and hopefully a pill or two to make you feel better. But all your tests come back normal. Again and again. The doctor tells you everything's fine.

It's like dreams we've all probably had. Trying to run, but getting nowhere. Or maybe the one where something is chasing you, but you just can't get away. You try and try, but there's no escape. At least you can wake up from a nightmare.

But unlike a nightmare, when people with Chronic Fatigue Syndrome (sometimes called Chronic Fatigue and Immune Dysfunction Syndrome) tell their friends and family what is happening to them, they often get blank stares or worse yet, judgment and criticism, in return. Try to talk to an acquaintance about CFS (Chronic Fatigue Syndrome) and I can almost guarantee you a response similar to, "Oh yes. I'm tired a lot too."

Living with this is bad enough. Bone numbing fatigue with the inability to think, stand or work at times. Pain, dizziness, sleeplessness on top of the fatigue, and much more are part of the daily routine. What makes it really tough (as if that wasn't enough) is that nobody thinks there is any thing extra ordinary that is wrong with you.

What's in a Name?

Maybe that's part of the problem. The name. Chronic Fatigue Syndrome. Bah. Even Chronic Fatigue and Immune Dysfunction Syndrome doesn't come close. Maybe no one understands what we have because most people are chronically tired. The difference is that fatigue is only part of the problem, that our fatigue is like nothing they have ever experienced and that they can fix it if they want to.

I have had CFS for over six years now. It has affected every aspect of my life. I can no longer do any of the fun things I used to do. I have gained over ninety pounds and cringe every time I see myself. I can't sleep and have persistant pain. Luckily, I can work. I couldn't for a long time. But that's about all I can do. Almost every ounce of energy I have must be directed towards earning a living.

So to call a disease that has been able to do this to my life "Chronic Fatigue Syndrome" is a little like calling an F-5 tornado "windy".

What Can We Do?

Believe me, I've thought about it a lot. What could I possibly call this disease, this condition, so that people will have some inkling of what I endure? I've come up with all sorts of names.

The best I could come up with is Chronic Systemic Hypo-Dysfunction. Unfortunately, it sounds like something that would wilt a house plant. And I can pretty much guarantee you that a rather small percentage of folks would have any clue what to make of "Hypo-Dysfunction". So I keep thinking.

What about plain old Bone-Numbing Fatigue? Nah. That leaves out most of the symptoms. The idea is to get across the fact that this affects every cell in your body. Unrelenting Exhaustion? Nope - see above. Utter Metabolic Slowdown With Severe Unstoppable Exhaustion, Pain and Brain Fog? Well, that might come close. It covers more, but not all of the symptoms. Except that it would be really awkward at cocktail parties. I mean, can you imagine going around saying I have "Utter Metabolic Slowdown With Severe Unstoppable Exhaustion, Pain and Brain Fog?" Very awkward. Especially when your eyes are at half mast and you find that you can not stand for any length of time.

CFIDsers Unite!

C'mon, if we put our collective foggy brains together we might just come up with something to take us out of Rodney Dangerfield status and get ourselves some respect. It is my challenge to you. I know you are exhausted. Believe me - I know. And I know it can be hard to think like you used to, but how about this? Send me some ideas for a new name for this disease. Email them to me at cyberlar24@yahoo.com.

Maybe collectively, we can figure something out. At least we will have something to tell our friends, family, neighbors and doctors. Maybe if we start using a new term they will begin to understand. There really is something wrong with us. Really wrong.