2:39pm March 11, 2014

Being tired is not the same as clinical fatigue.

I know I’ve mentioned this in a few posts but I wanted to give it its own post, because it’s incredibly important for able-bodied people, and for disabled people who are otherwise fit and healthy, to understand this.

Being tired, even being exhausted, is not the same as the kind of fatigue that people with chronic illnesses are dealing with day to day. And I knew this, intellectually. But after going on steroids to treat adrenal insufficiency, and getting some stamina back, it’s like a revelation.

I haven’t really had much in the way of clinical fatigue since I got on steroids. I only feel it on my bad days, and my bad days aren’t all that bad compared to how they used to be.

I do get tired. I get exhausted. But even at my most exhausted it’s not the same.

Fatigue, when talking about in a medical sense, is more than exhaustion. It’s a sense that everything is drained from your body. You don’t just feel tired, you feel sick. Your body doesn’t work right.

I wish I could just upload the feeling into people’s heads so they’d understand it’s not the same.

Like, take the feeling of clinical fatigue, wrap it in a package, and hand it to all the people who think that chronically ill people are just lazy.

And then take the feeling of ordinary tiredness without clinical fatigue, wrap that up in a package, and hand it out to people with chronic illness so they’ll remember that they’re not just lazy or tired.

Because that’s so hard to remember in the thick of things. It’s easy to think that you’re only dealing with the kind of tiredness everyone else gets. It’s easy to start believing that you’re just not trying hard enough.

But if you ever get the chance to try a treatment that works, and works big time, and alleviates a good chunk of that fatigue. Then it’s crystal clear that if anything you were working harder than most people do, and for less results.

Because that’s what keeps coming back to me. So many things are so easy now. I was working harder than I’ve ever worked in my life, and getting nowhere. And now I’m barely working at all in comparison, and I’m improving every day.

So this understanding is important for healthy people because they often expect too much of us. But it’s also important for sick people because we expect too much of ourselves.

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