CFIDS Description

Most people don't realize how disabling CFIDS is. If you have never had it, it's impossible to really understand what CFIDS is like. Here's my attempt to help you get an inkling.

Pretend that the farthest you ever ran in your life was a mile, back when you were in top condition. Years have passed. Now you are totally out of shape.

Now imagine running a marathon. At the end, you are totally exhausted, barely able to stand up. Suddenly, you get the flu. Then someone forces you to drink a half a bottle of tequila.

You are totally exhausted, ten times worse than anything you've ever experienced, and you have a nasty headache. You have a sore throat, you hurt all over, you feel feverish, with chills, and you can't think clearly or remember things which happened five minutes ago. When you stand up, your head spins and you want to lie down before you fall down.

Now throw in some more random symptoms: excruciating joint pain now and then, ringing in your ears from time to time. When it's hot, your symptoms get worse. When it's cold, you freeze. You have chills, night sweats, digestive problems.

And insomnia. God, the insomnia is the worst! You're exhausted, but you can't sleep. If you do get to sleep, you awake after a couple of hours, with an overwhelming need to urinate. Back in bed, you lie awake, looking at the ceiling, tossing and turning, anxiety building as you imagine the bank padlocking you out of your house, putting your furniture, books, computers, tools, clothes, and everything else you own in the street. Except your car and your airplane, which they come and take away.

After a few weeks or months, you gradually get a little better, and finally you have a day in which you feel almost normal.

Excited, you go out to the grocery store, get some food, maybe have a friend take you to lunch. "Fantastic!" you think, "maybe I'm finally getting my life back."

The next day, all the symptoms are back, nasty as ever. You can barely get out of bed to brush your teeth.

The cycle repeats itself, over and over, as the months turn into years, until it is difficult to remember what it was like to be healthy.

You wonder if this will ever end.

By now you know that for many people with CFIDS, it never will.

Support Systems

There are three major cultural institutions in the United States whose responsibility it is to take care of those who are chronically ill and disabled: the medical community, the disability insurance industry and the Social Security Administration.

With respect to people with CFIDS, none of these institutions are doing their jobs.

I've written a little description of what you might expect from the medical community if you had CFIDS.

For the others, at the moment I am simply too angry to write anything coherent.

For another view of what it is like to live with CFIDS, read Michelle Akers' description at her CFIDS Site.