1. "I get tired too."
The ridiculous moniker hung long ago upon this debilitating disease continues to throttle us. "Chronic Fatigue Syndrome". Its name is all about being tired.
Everyone and his dog is tired. Take an unofficial impromptu poll anywhere. People can hardly keep going. I remember what that was like. Quite fondly, actually. That was when I could keep going. Wanted to do it. Did do it. Gloried in it. And now it is beyond me.
We are more than tired. This goes way beyond fatigue. Beyond exhaustion. Somewhere past the town limits of depletion. Just short, it seems, of annihilation.
2. "You don't look sick."
This one used to really bother me. Till it occured to me that maybe it would be worse if I looked as bad as I felt. Didn't want THAT peering back at me from the mirror.
But to be told I looked fine seems somehow to negate my experience. A casual glance and a wave of the "Fine" magic wand, and Jody's chronic condition was shuffled and put aside.
3. "If you'd just get some exercise ..."
Here, I'll finish this sentence for you – I could drop on my face for a month and a half. For many with CFS this is the truth of the matter. I've been in that group for long stretches. I'm just now coming out of one of those stretches again. Hopefully as I continue to improve, I'll be able to do more.
Some can exercise if they stay within their limits. Some can't. The point is, exercise won't cure CFS. And if it's done wrong, it can make it much worse.
4. "This is obviously depression."
Some people with CFS experience relief from low-dose antidepressants. That's good. But what we're suffering from isn't depression. If that were the case, and if antidepressants would fix this, I'd be happy to say so. But CFS is not depression. And there are too many symptoms that this would not address.
We know what we grapple with on a daily basis. It isn't depression. It's a multi-system melt-down.
5. "It can't be that bad."
This is so demeaning. So trivializing. So obviously a way of brushing aside our condition.