“Yes, I’m tired all the time too.”

Do you remember the first time someone said that to you? The last time? As everyone who has ever tried to explain having ME/CFS knows, most people just don’t get it. That their tired and your tired are not even on the same planet. It cannot be fixed by a nap, a good night’s sleep, or by a schedule change. This is the metaphor I came up with to help people understand the difference and how it sounds to me when they say that:

I ask her to imagine that she has just taken a final exam on which she performed poorly when she expected to do well. Of course she is disappointed, sad, maybe even angry. Then I ask her to imagine that we are having a conversation. I tell her that my mother has died, and that I am just devastated. She replies that she knows exactly how I feel, because she just did poorly on a test. Then I can either let it hang or spell it out: this is difference between us saying “I’m tired.”

It’s difficult to imagine someone actually reacting that way, of course, because most people can imagine how sad they would be if their own mother died. And I think that many of them wouldn’t make the comparisons they do (“Yes, I’ve got that too–it’s called being lazy”) if they could as easily imagine what is felt like to have CFS, and this is how I try to help them do that.

Feel free to borrow the metaphor if it works for you. 🙂

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