The 5 (or 6? or 7?…) Stages of Living With Fatigue: From Resignation to Acceptance!

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As I’ve thought about my experience with fatigue, my invisible yet constant “companion” throughout most of the past five months, I can see that I have reacted to it in a variety of ways.  At times (primarily in the first couple of months) I’ve just felt beaten by it–so tired that there’s no thinking about it, only reacting to it, and by “reacting to it,” I mean, of course, sleeping whenever possible!  At other times denial has reigned, on those occasions, of example, when I’ve tried to convince myself that it’s simply a question of “mind over matter,” and done things like take a 3-mile walk out of the blue, and another time, not take a nap for three days straight.  In both of those cases, it was only a matter of hours before I was paying the price–on the couch, utterly wiped out–and realizing the folly of my ways!!  I was also operating under the influence of denial, I now know, when, every week for those first few weeks, I would think, “Surely I’ll be feeling better by next week!…”  HA!  🙂  Many, many times I’ve felt frustrated–“I’m so tired of feeling so tired!!”  At yet other times, I’ve felt guilty–for not doing more, for becoming so “self-absorbed” (not having the physical or mental energy to be very much engaged in anything other than myself and my family), for feeling so “all right” in other ways (all the ways I mentioned in my previous post that I was not showing signs of sickness) and yet living within such a “small sphere of concern”….  And in the interest of full disclosure, I will admit that anger and self-pity have reared their ugly heads on occasion as well–“I know this could be so much worse in so many ways…but right now, it really sucks!!!!” …or “I hate having to take a nap every day!!  I’ve got things to do! I don’t have time for a nap every day!”…or “I’m young, and strong, and healthy!  Why do I need to take a stupid nap every day?!?!”

Not surprisingly, none of those reactions was very helpful.  They were real, for sure, but not helpful.  Nor were they very enjoyable to experience…for me or for anyone around me!  In the midst of feeling them, and expressing them, which I seemed to intuitively know I needed to do (and I am deeply grateful that for those in my life who let me, by just listening supportively without trying to talk me out of them…), I recognized that I didn’t want to stay for very long “with” them.  I didn’t want to get stuck in any of those places–resignation, denial, frustration, guilt, anger, or self-pity…..

Nor did I want to let others “keep” me there…. By far, the most common reaction of others to my situation has been, “Oh, I’m so sorry!”  And I can understand where that reaction comes from–a place of compassion, a place of concern.  When someone we care about is going through something that seems unpleasant, or unfair, or difficult, or painful, our typical reaction seem to be to wish that they weren’t!  Because we love them, we don’t want them to suffer, and when they do, we don’t like it!  It’s not fair!  It’s not right!  It’s not good!  And so we say, “I’m so sorry you’re gong through this….”  With the best of intentions, with all the kindness and compassion and sincerity that is within us.  And perhaps, with some unspoken yet unsettling feelings of “Wow, I don’t know what I would do if that happened to me….That would be so awful….”  I suspect that is part of what is rolling around within us, when what “spills out” are those heartfelt, concern-laden, four little words: “Oh, I’m so sorry!”  And we hope that’s how the person receives it….

Initially, that’s how I received it.  I felt the sincerity and concern of the friends and relatives who spoke those words to me.  I knew they were genuinely sorry that I was having to go through this (and my family, too!), and that they were hoping and praying that it wouldn’t last long, that I would recover my strength and energy sooner rather than later….  Those are certainly all things that I was hoping and praying for, too, of course.  Enough already, right?!?  I was tired of being so tired!  I was tired of not being able to do more!  I was tired of not being able to do everything I used to do!  It wasn’t normal for me to have to take a nap every day!  So, yes, when people responded to what I was going through with genuine expressions of sympathy, compassion, and even outrage on my behalf, encapsulated in those four little words, “Oh, I’m so sorry!” (or occasionally, even more succinctly, “This really sucks!!”  🙂  ), I welcomed and gratefully accepted their concern.

At some point, though, I began to feel differently.  I’m not exactly sure when or where it started, but I began to experience a subtle change within myself….  For starters, I got beyond the anger and truly did acknowledge that it could all be so much worse, in so many ways.  Certainly the diagnosis could be much worse (well, there still was no confirmed diagnosis, but the docs seemed pretty sure that nothing really bad was causing the fatigue.  And I tended to agree.).  And also, my circumstances seemed about as optimal as they could be for someone having to go through what I was going through:  1) I had a well-established network of local friends, primarily springing from my community of faith, whom I could (and did!) call on for “practical” support, whether in the form of meals, help with the kids, errands, transportation to doctor’s appointments, etc.; as well as for moral support, in the form of encouragement and prayers (and also very important:  letting me express my anger and self-pity as needed!); 2) I had extended family members who were willing and able to come and help us out, at the drop of a hat, each for a week at a time; 3) my husband, although initially shaken badly by the stress, chaos, and uncertainly of it all, was able to rise to the challenge and be completely supportive in ways both tangible and intangible; 4) my children are all old enough to not only be fairly self-sufficient but also be helpful around the house with things like cooking and cleaning; 5) I had a huge network of friends and relatives around the country, and even from a few diverse corners of the world, who were praying for me ceaselessly, sending notes of encouragement via both email and snail mail, and otherwise offering intangible yet indispensable forms of support; 6) since I am not “gainfully employed” at the moment, I did not have to worry about missing work for weeks or months at a time; and 7) I had faith.  I had a soul-deep belief that everything would be all right, no matter what the diagnosis turned out to be.  I knew that God was with me, with us, and would continue to be with us, no matter what happened.  In all of this, I have never felt scared of “the unknown,” never fearful of “what could be”…which goes back, I think, to my trust that “all shall be well, and all shall be well, and all manner of things shall be well” (Julian of Norwich)….

And not only could it all be so much worse…but I began to see that profoundly good things were coming to me, and to my family, as a direct consequence of the fatigue.  Because of what I, and we, were going through, all of our relationships were deepening.  I was getting to know each of my children more deeply, and learning more about who they were as individuals.  I was spending more time with my husband, not doing things with him (or for him!), but just being with him–going for walks (sloooooow walks!) and talking, sitting on the couch and talking.  We were both talking more openly, and with more vulnerability, about what we were feeling and experiencing in this challenging time….  We were talking more often about our kids, individually, reflecting together on their personalities, on their make-up, on their souls…and sharing thoughts on how to best help them each grow into the person God has created them to be, how we could best parent each of them….  We were all becoming more connected, more deeply, than we had been before–because of the fatigue….

I gradually began to feel grateful for the fatigue.  I began to consider that perhaps its sudden appearance in my life had been a gift, rather than a curse.  I began to see my experience not as something to be resisted and wished away, but as something to be accepted…and even embraced.  I began to squirm, ever so slightly, upon hearing those four little words, “Oh, I’m so sorry!”…sincerely and compassionately offered though they were…. I didn’t want others to feel bad that I was “having to go through this,” nor did I want to be “encouraged” to return to thinking that maybe I should feel bad about it (not that that would be anyone’s intention! but an easy place for me to slip back into if I “wanted” to)…. It was no longer a bad, unfortunate thing that I had undeservedly been burdened with and had to suffer through until it was over.  Rather, this experience with fatigue, though certainly unexpected and initially unwelcome, had become something for which I felt grateful….

I had moved to a place of acceptance.  What a much more gratifying place to be than resignation, denial, frustration, guilt, anger, or self-pity…. Hopefully that made me a more pleasant person for others to be around…!!…but more importantly, I think, it allowed me to find peace in my soul.  I quit fighting with the fatigue, and instead called it friend….

I don’t know how long this experience with fatigue will last, but the gifts that have come from it have the potential to last the rest of my life, if not perhaps even beyond.  🙂  And that is something to rejoice in, not resist…. It is something to feel glad about, not guilty…. It is something to give thanks for, not lament over….

So, please ask me how I’m doing–I’ll tell you.  Feel free to offer a meal–I’ll accept!  Let me know that you’re thinking of me, and my family, and keeping us in your prayers in this challenging season of our lives–I will be deeply grateful.  But please don’t say you’re sorry that I’m having to go through this.  I might just punch you in the nose!  🙂  …once I regain my energy….  🙂 🙂

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