When someone is chronically ill it can be hard to know what to say to convey your concern and sympathy. Here's a few things you shouldn't say.
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 occurred 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. The person speaking these words isn't interested in us.They don't want to be inconvenienced by even acknowledging that we might be suffering. So they just tell us, we're not.
6) "My friend had that but they weren't sick this long."
This astonishing comment pits us against another person who was sick and ... we lose. Draw your own conclusions as to why you shouldn't say this to someone with CFS. Or any chronic disease.
7) "You sure you're not just doing this for the attention?"
Somebody said this to me once, laughing so as to make it seem like a ... joke?
Would this seem funny to you? It wasn't to me. My response after the first jolt, was to say, "Attention? What attention? I've never gotten less attention in my life."
8) "If you prayed more you wouldn't be sick."
This one is a double-whammy. Not only is there no milk of human kindness being expressed over the fact that we're sick. We're also unspiritual, or selfish, or ungodly.
9) "If you really wanted to get better ..."
Now our intentions are suspect. And, we're stupid too.
Who wouldn't want to get better? Who wouldn't prefer to be healthy and clear-headed, without vertigo or brain-fog? What reason could we possibly have to want to stay sick? Because we like our skinny income, sliced to a fraction of its former self? We like being ignored? Or lonely? Or frightened about what the future holds?
We'd have to have a major screw loose not to want to get better. And we don't have a screw loose. We're sick.
Whatever else you do, do not say nothing.
Many of us have limited contact with the rest of the world. Some of that contact, as you've seen in my nine earlier points, leaves much to be desired.
Do not change the subject when we refer to our illness. Do not swing around to what you had for lunch, or where you went for your vacation. Something important is on the table. Don't just leave it lying there. An astonishing majority of people do.
You may be the only person this chronic one has spoken with all day, maybe all week. Maybe longer. You have a chance to make a difference for them.
Please. Make it count.