Chronic fatigue and what people see and don’t see

Yesterday, I met with two friends from art school that I haven’t seen for many years.

From their perspective, and if they didn’t know better, they met someone who looked and seemed well and engaged. And it’s easy for them to extrapolate and assume that’s how I am all or most of the time.

The reality is quite different. I rested for days before this meeting. The meeting was brief enough so I was able to stay engaged most of the time. (In groups, I also have a strategy of allowing others to talk while I rest.) And I am spending today in bed.

This is one of the classics for people with Chronic Fatigue Syndrome (CFS/ME). We are often able to mobilize for short periods. (Especially if we can plan ahead and schedule rest before, during, and after.) And if someone only knows us through those glimpses, it’s easy for them to assume we are doing pretty well while the bigger picture is quite different.

I don’t always say anything about this to people. But if someone is a little more central to my life, I tell them what’s going on: I am able to mobilize now and then, especially if I can plan ahead and rest before, during, and after. It does cost, and it’s often worth it.

The same goes for what I write here, in its own way. I am only able to write now and then, often for a few minutes early in the day. Most posts are written in a few minutes. And I chose topics that are the easiest for me. Topics I know well from my own experience and where I don’t need to look up any background information.

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