“You’re not even sick any more!” said my 9-year-old son Ryan. It was mid-January, and I had just told him and his brother and sister that they would be going to church the next morning with a friend, as they had done on and off since all this began in late September.
“I don’t want to go with her!” Ryan whined. “Why can’t you go with us?? You’re not even sick any more!” He looked at me pleadingly….
Ahhh…how to answer??? Was I still “sick”?? I certainly wasn’t well…but as far as the kids could see, there really wasn’t anything wrong with me…. I could easily understand why Ryan would think–and say–what he said. I wasn’t throwing up. I didn’t have a fever (the golden standard for determining whether you’re sick or not, in elementary school!). I wasn’t blowing my nose, sneezing, or hacking up a lung. I wasn’t staying in bed all day any more, or even spending inordinate amounts of time on the couch! And I was up with them in the mornings, I was upright and functioning when they got home from school, I was cooking supper again most nights, and I was getting them into bed. As far as they could see, I wasn’t “sick” any more!
What they weren’t seeing, though, was everything I wasn’t doing–no volunteering, no exercising, no running around all day every day–because I was not doing all those things while they were at school. What they weren’t seeing was the 2-hour nap I was taking every afternoon while they were at school (although they did see me nap on the weekends). What they weren’t seeing was the exhaustion I felt after every interaction I had with anyone, after every little bit of activity I attempted…the exhaustion that I felt every night and expressed only once they were all in bed, by falling onto the couch, letting out a long sigh, and saying to my husband (or myself, if he wasn’t in the room!), “Phew, I’m tired….” What they weren’t seeing was the exhaustion I felt all the time, underlying each moment, just waiting for any quiet moment so that it might come to the forefront of my awareness and announce its presence with an authoritative shout rather than its more typical niggling whisper…..
How could I explain all these things that could not (cannot…) be seen but which were (are…) so real? It’s not easy. It’s what seems to me to be the invisibility of fatigue. The absence of visible symptoms. The lack of a diagnosis, a name, a “culprit” on which to pin all of this. And yet, the reality of the exhaustion. The constancy of the tiredness. The indisputable fact of the ever-present freakin’ fatigue and how it is affecting me….
“You’re not even sick any more!” My son’s words cut to the heart of the dilemma that he and I both, apparently–and perhaps others??–felt from time to time: I really didn’t seem sick…but I clearly was not yet well…. What to do with all of that? How to explain it to others, whether family or friends?? How to make sense of it myself?????
I don’t have a single, simple answer to those questions…but I do have some thoughts about it. Surprise, surprise! 🙂 And I will share them in another, soon-to-come post. But at the moment, I simply wanted to raise the issue of, and share my experience with, the difficult yet real “invisibility of fatigue.” Stay tuned for my reflections on how I’ve handled it…. 🙂