Someone close to me recently wondered out loud if, perhaps, the “secondary gains” that have come to me as a consequence of my experience with fatigue (going on eighteen months now) could possibly be so good and pleasing to me that I might, on some level, be actually willing this condition to continue.
My immediate reaction was, “What?!?! That’s crazy! No way!”
But then I thought, “Hmmm…could it be so??….”
There is definitely good in my life now that was not there before–things that have changed for the better, valuable lessons that have been learned–as a direct consequence of my fatigue-related limitations.
The question remains, however, is that good enough to make me somehow, on some level, desire–indeed, actually will–this condition to continue?
Out of an honest acknowledgement of how well this person knows me (and loves me!), rather than simply dismissing the notion out of hand, as was my inclination, I decided to chew on it a little, thinking again about what some of the secondary gains have been through all of this. What good has come to me as a direct consequence of living with chronic fatigue? Briefly…
1. I have observed noticeable positive changes in several significant relationships in my life, including (but not limited to) my relationship with my husband, my relationship with each of our kids, and my husband’s relationship with our kids.
2. I have witnessed increasing levels of responsibility and independence in my husband and in our children. This is deeply gratifying to observe in terms of their personal growth as individuals. Also, in all honesty, this translates directly into less work for me! What’s not to like about that?? 🙂
3. I have been released from many expectations others might have of me. Outside of my family, it seems that hardly anyone expects anything of me, and I admit that I’ve come to appreciate the sense of freedom that has resulted….
4. I have reflected more intentionally on my priorities and how they play out (or don’t?) in the ways I choose to spend my time and energy. Having been forced to acknowledge that there are, in fact, limits to how much I can give/do/be for others–pretty significant limits at the moment–I have been more thoughtful about that giving, doing, and being.
5. I have been given opportunities to cultivate compassion and uproot judgment, within myself, understanding with new depth that things aren’t always as they seem, that everyone has struggles invisible to the outside eye, that there are reasons why people do what they do, and that generally, we are all doing the best we can, with what we have, at any given moment.
6. I have to come to trust God more deeply, to believe more steadfastly in an unseen reality that is so much bigger and more complex than anything I, or any of us, can see or know or understand. I feel as though there is a greater purpose to our struggles and challenges, to these particular struggles of mine; that what I am going through is somehow something more than “just” the physical symptoms. And even if I don’t know exactly what that “more” is, or what that “greater purpose” may be, I believe in the depths of my soul that it will all, ultimately, be used for Good in that unseen reality in which we all participate, knowingly or unknowingly, that is the Reality of God….
To the best of my knowledge at the moment, that list captures the essence of the good that has come, and continues to come, to me through this experience. Is it significant? Definitely. Am I grateful? Indeed! Does it outweigh the “bad”? I try to make it so. Is it enough to cause me, on any level, to will this fatigue to continue? I guess I can conceive that that’s possible…. But before I’m willing to concede that it’s true, I need to consider, and reflect briefly on, the losses, limitations, and less positive changes that have come into my life because of it.
1. I’ve lost time. I sleep for close to an hour every day (and occasionally closer to two!) out of necessity. Every so often there is a day when I cannot, due to scheduling conflicts, and yes, I am able to get through that day…but for a day or two after that, I pay the price, feeling more run-down, tired, and headachey than usual. Adding up the hours I spend napping each week, I figure that’s 7-8ish hours a week “lost,” which is the equivalent of a good chunk of a day, really….That translates to something like 80 days (~80 affected weeks, 7-8 hrs./week), or close to three months of time…”lost”/spent sleeping! And that’s being conservative, as for many months I napped closer to two hours a day…
2. I’ve lost the capacity to volunteer as I used to, whether in my kids’ classrooms, at our church, or in other community activities. Rather than being energized by those types of interactions, as I had been for as long as I can remember, I am now depleted by them. And not only am I depleted by them, but the “recovery time” needed following those rare occasions when I throw caution to the wind and do it anyway, is so significant that it is rarely worth it to me to do it. (See above for “paying the price”!)
3. Somewhat related to that, I’ve had to rethink my identity! I had always been someone who did for others, be they family, friends, acquaintances, or strangers. If there was something I could do to be helpful, I wanted to do it. If it was inconvenient to me, no matter. If it required some sort of sacrifice on my part, all the better! It if would be helpful to someone, somehow…if it would ease anyone’s burden, somewhere…if it would make the world just a little bit better, in any way…then count me in! I wanted to help. I lived to do for others. As of September 23, 2013, that came to a screeching halt. I became the one needing help rather than giving it; my default answer to requests and invitations became “I’m sorry but no,” rather than “Yes, of course!” The only thing I could do for others, it seemed, was offer them opportunities to do for me!! Who had I become? Who was I now? I’ve had to rethink that, to accept that just being me (without doing for others) is okay, is enough, and just might, even, be good….
3. My world has become very small. If it doesn’t happen within the walls of our home, within the lives of anyone in our family, or within the lives of any of my shrinking circle of friends, I probably don’t know about it! I simply do not have the energy to stay on top of much else.
4. I do not have the contact with friends, both local and distant, and even far-flung relatives, that I used to. I never would have even given this a thought a couple of years ago, but I have come to realize that it actually takes a significant amount of energy to maintain relationships! It takes time, it takes emotional investment, it takes making an effort…and I just do not always have that in me these days. Not only does that make me sad, but it can also (and has on occasion, I know) caused sadness, frustration, and even feelings of hurt in those friends and relatives, which doubles my angst!
5. I have seen my husband struggle with all of this. I’m sure I don’t know all of the ways this experience has affected him, but I do know that as someone who not only loves me deeply but lives with me daily, he has lived with the reality of my fatigue more than anyone else. Not only has he been concerned about my physical well-being in the present, he has occasionally felt anxious about the future–is this going to last forever? Not only has he had to take on more responsibility at home, but he has had to find new ways to try to balance that with his responsibilities at work. Additionally, and perhaps most significantly, he has had to witness and adjust to the dramatic and seemingly overnight shift in my personality, going from an active, outgoing, fun-loving, and energetic person to someone who needs to take a nap every afternoon, who wants to stay at home as much as possible, who avoids making eye contact with others when she is out and about so as not to have to talk to anyone(!), and who is exhausted and headache-y almost every night by 9:00. Through all of this, I have never doubted his love for me, nor has his support ever wavered, things for which I am deeply grateful. But none of this has been easy for him. And that’s hard to witness, knowing I’ve “caused” it….
6. I have turned to flab! 😦 Not that I have ever been solid muscle, but in the couple of years immediately preceding the onset of this fatigue, I had gotten into the best shape I’d ever been in! I was walking and sometimes even jogging 2-3 miles/week. I was taking 1-2 classes/week at our local YMCA. I had dropped not only several pounds but a couple of sizes. For the first time ever, I felt good–great, even!–about my body, enjoyed going shopping for clothes, and loved wearing sassy, snug, sit-below-the-waist jeans, a tight-fitting shirt (that I proudly tucked in!), a belt(!!), and my cowboy boots! I was lookin’ good! And then this blasted fatigue became part of my life, and most of my exercising ceased. For several months, not only could I no longer jog or even walk for three miles, but when I did walk, I went so slowly that it took me twenty minutes or more to walk half a mile. I could no longer take the classes I’d come to love and dropped my membership at the Y; it was apparent that the money we were paying for it could be more wisely spent paying for all of the doctor’s appointments I was having and blood tests that were being done! The pounds slowly came back, and my new clothes went from being cute-and-sassy tight to uncomfortably and unattractively tight! This may seem trivial (and perhaps it should be), but as is evident by the length of my description of this “loss,” it has affected me more deeply than I care to admit….
I think that’s enough.
Suffice it to say, there have been gains and losses in my life and the lives of those around me throughout this experience with fatigue. I suspect that’s true of any life experience, if you look hard enough, with an open and honest heart. There’s always good with any bad, and bad with any good. Perhaps it’s just a matter of where we choose to dwell.
Am I grateful for this experience? Yes. Would I have chosen it? No. Have I gained from it? Yes. Do I wish I had never gone through it? Truly, no. Would I like it to be over? Yes…as long as I can hang on to the “good” that has come with it. Would I give up all that “good” if it meant getting back all I’ve lost? No.
Am I somehow willing this all to continue, on some level nursing it along, in an unconscious effort to continue to benefit from “being sick”? With all of the integrity I can summon, having considered as honestly as possible the gains and losses, I do not believe that I am. As Henry Wadsworth Longfellow wrote in his poem, The Rainy Day: “Into each life some rain must fall,” and this is some of my “rain”! If and when it stops, I will be grateful, but in the meantime, I will give thanks for the rain. After all, that is how things grow, right?