Chronic Fatigue: The Challenge of Being Well
On the spectrum from healing to whole
I woke up not waking up, like usual, feeling a sense of dread about how the day was meant to go. I am supposed to rest, to be productive, and to find some mythical, intentional, liminal space between the two. To tread the line between resting, in order to avoid post-exertional malaise, and exercising, in order to avoid deconditioning which will also make me more fatigued.
Why is the onus so much on us, the sufferers of this damned condition? By the time you are calling it chronic fatigue syndrome, you’re likely to be the most tired and disheartened you’ve ever been, and yet healing from it is entirely on you. From diagnosis to treatment, you encounter layers of medical onion peels and mysteries of inner wisdom to unfold.
It’s one big Gordian Knot in response to decades of internalized oppression from capitalism. Pushing yourself isn’t just a bad habit, it’s a common way of life. Now you’re supposed to find a way to experience life, to be, differently by getting balanced without working too hard. I still don’t get how this happens.
My husband asks me how I am and if I need to rest again today and I feel called out. He doesn’t mean it that way, he just wants an update, but it’s hard not to feel as disconnected from my family as I do from the rest of my life. But I’m not supposed to feel that. I’m not supposed to feel sorry for myself. I’m not supposed to identify with this as a condition that’s a part of me or to take anything personally and judge myself. I’m still confused, though, about how then I might optimally feel for the sake of my wellness.
I love having my dogs around, because they could care less about inner guidance, and so far, that’s one thing that actually helps.
Chronic Fatigue as a Metaphor for Modern Life
I’m exhausted just writing this. Three morning pages a day, is that too much of a mental commitment?
I’m going to do the self-led pacing program, I hope that will give me some perspective and help me be more proactive, but I don’t know.
I’ve been thinking a lot about chronic fatigue as a metaphor for modern life and I hope to publish something more polished about it. In less than poetic terms, meanwhile, it goes like this.
We’re pushed into the system at an early age. It’s called school. If you’re lucky with good family support or even just good enough performance for whatever reason, you do well. Like a rat pressing a lever for food, you do your schoolwork and gain recognition. It might come naturally, and you excel, or it might be a grind and you do it anyway cause that’s your job. You learn to be a good kid by going to school and doing your duty.
That goes on a really long time, through all the phases of mandatory education — elementary, junior, and high school — and then if you’re of a certain class with certain expectations, or again, just academically smart and a high achiever for whatever reason, you go to college. Maybe even to grad school for a master’s degree or a PhD.
At some point, you transition from school to work, where you’re supposed to be happy. You find your partner, or some other kind of steady social network, you have personal and financial goals, and hopefully you don’t make too much of a mess of it all.
Hey, I said it’s not poetic.
What You Do Is Who You Are
The values you end up pursuing throughout your academic career often become those that define how you live your working life as an adult and what you pass onto your kids, if you have them. This defines how you make your mark, intentionally or not.
If you’re a woman and have children, then maybe you don’t work as much when your kids come around, or maybe you do; either way, you’re dealing with that consequence alongside the rest, because that’s what mothers encounter. Of course, often times fathers encounter it too.
All the while, you are laying out and walking through the touchstones that compose one’s self-worth. What you do is who you are.
Sure, Americans might be worse in their sensibilities than other cultures as far as blatantly connecting their identity to their paying professions up front and center. We’re so focused on work in the US that it is often all we think and talk about.
But in other cultures, among educated classes, it’s still pretty much the same process of self-valuation, even if it is more focused on personal activities. It’s still a framework that tells us that what we do is who we are, especially in comparison to others.
But, if we’re not doing, then how can we rely on being to define us?
I’ve been pondering how chronic fatigue is a hidden epidemic that’s channeling the impact of rampant capitalism. We have used ourselves up by depleting our energy. Think peak oil or melting polar ice caps, desertification inside the microcosm of one organism, the human body.
It’s telling when they teach you about pacing to protect your energy in the face of fatigue. The analogies are either that of a battery that no longer keeps a steady charge or measuring units of money as a way to pace our energy and avoid an unintended deficit.
Until the hard cold slap of chronic fatigue or some other rude awakening, we approach our lives through the framework of modern-day economics, powering through with an abundance-scarcity, dualistic mindset: produce, produce, produce; consume, consume, consume; rinse and repeat.
Yet when sleep is no longer a renewable energy, we end up spooling; the cogs in the wheel are jammed, so then what?
Meeting the Enemy
It’s kind of like Hal, from Space Odyssey 2001. “We have met the enemy and they are ours.”
Chronic fatigue and other forms of chronic illness are our Golem; modernity has created it and now we don’t know how to stop it.
I’m so angry writing this about myself. I wish I could maintain a distanced tone and come out the right side of wrong. I wish I could bring my New Agey, it’s-all-for-the-best-self to it. I know I ultimately must make the best of it, but right now, I don’t know where to go.
The chronic fatigue influencers talk about surrender and self-acceptance. CHECK! Done that.
A lifelong journey of coping with high functioning depression and anxiety has fully developed my self-acceptance muscle. If that didn’t do it, then parenting with CPTSD while being a new immigrant certainly did.
On top of which, increased self-acceptance is part of middle age. You’re too tired, busy, or focused on other things to resist who you are. With age comes familiarity, not only of oneself but also of the human condition, which is pretty much the foundation for self-acceptance.
CFS influencers also talk about nonattached commitment. CHECK, got that too!
A four-year fertility journey with several early pregnancy losses taught me how to give it my all while keeping my head above the murky waters of knowing the grave potential results. After my second loss, I charted into the territory of recurrence and encountered women who were pushing a dozen losses and still trying. I intimately knew the risks that came with each attempt to conceive and braced myself every time, including my final, successful pregnancy.
My delivery and postpartum period were no piece of cake, either, but when all was said and done, along with an amazing child, I gained lifelong skills that will never leave me. I can be unattached to outcome and still get shit done, dammit. I’m all about process.
What They Don’t Tell You
They also tell you that you have to believe you will get well again, as it’s pivotal to continuing to try and help yourself. I’m down with that. I hope.
What the influencers don’t say though, I mean at least not in what I’ve seen so far, is how to see life differently. How to really fumble in the dark, not knowing what to do. How to take what you thought you knew, like self-acceptance and non-attachment, and admit that despite your hard work, it’s still not enough.
Now you have to be patient and measured about it all, too.
It’s not just self-acceptance, as in — yeah, I suck at some things, but I still know that I’m a good person; but rather, radical acceptance, as in — you may forever wish this were different but you’re going to have make it be ok anyway.
You can see better but you can’t do it, and you have to figure out how to live with that. This runs counter to American capitalist sensibilities which tell us that we deserve the best and we’re namby-pambies if we accept less.
We’re supposed to focus on getting better but not on doing better. We need to maintain and advance our physical capacity, while still protecting our energy and not overextending ourselves. We must not only accept the paradoxical ambiguity of chronic fatigue but ride its waves as part of our everyday life for an indefinite period of time.
It seems as impossibly simple as what I’ve heard the psychedelic psychotherapeutic experience to be, walking with death beside you in order to better appreciate life. It’s counterintuitive until your intuition changes. But without radical intervention or an investment of energy you don’t have, or even just some good drugs, how does that happen?
A Little Tomorrow
It’s Sunday, after a week of bedrest despite my measly efforts at pacing my schedule. I’m staring at another day in bed. I don’t know what else to do. I’m not sure if I’m here because I’m scared of getting tired or I am actually tired. I feel lazy but I’m trying not to judge it. Given that I have a few bursts a day of stable energy in 20-to-30-minute increments and am tired the rest of the time, it’s probably all of the above.
I’m planning on making a list of how to be productive in bed. How to take power naps and other planned rests by lying quietly in the dark, reading, and watching tv, and interspersing that with higher level brain activity and social engagement. I’m wondering how to avoid getting lost in the blur of time and space without an externally determined schedule. I’m living in a time warp.
My motivation to commit to this level of compromise is numbingly low. It seems silly to time my breaks when it’s all one long break anyway. It’s hard to carve out specific periods of productivity when it’s tiring and imperfect no matter what I do or how briefly I do it. It’s so unsatisfying to be a recovering productivity junky.
Before this, I would proudly say I have a strong life force. I’ve been so committed to reframing anxiety as high energy, and now I have to step back from that, too. Without energy, how do I keep my sense of passion and purpose alive?
Peer supporters in the Facebook groups tell me to just rest. Maybe sit by the window for some natural light and meditate less intensively by letting myself zone out without a plan. Argh.
It’s too much, too little. Both my internal clock and my spirit, which feel indistinguishable, are telling me mañana, ahorita ya; Mexican for tomorrow, immediately now, and yet actually much later, maybe never. Or, another favored cultural reference, malo sutra, Bosnian for a little tomorrow, which is to say, “yeah, right.”
It’s no coincidence that these expressions which play on the tension between intention and the flexibility of time come from well outside of the American Protestant work ethic. In reality, though, in my American born body and sensibility, I feel like my body is the day after the day after.
Whoopee! We’re All Gonna Die.
My father grew up in the Depression and was always convinced that things would economically bottom out and take us by surprise. Then of course, growing up during the Cold War myself, the nuclear holocaust was just around the corner, or possibly a global pandemic or cyber crisis. I was ten years old when “Apocalypse Now” came out. The title alone sends a message.
Today there’s climate change and global scale human rights abuses like human trafficking. Whatever their political origin, there’s a kernel of truth in most fears of global destruction, regardless of how accurate or misguided the trappings.
Today’s Armageddonists are building on a century of doomsday perspectives and more. Ultimate doom has always been the view down the line no matter when we looked. After all, humanity was born to self-destruct, it’s just a question of how well we do so.
Whether it’s by natural means of age or illness, or by human artifice through violence, poor nutrition, iatrogenic causes, accident, or something else, we’re all going to die. It makes sense that ultimately our home, the earth as we know it, will die too. It’s the only life cycle we know.
But still, we do hope our turn at life is as good as possible and that’s what chronic fatigue can take away from you, if you let it.
The Price of Separation
I’m still, slowly, getting into his book, but Charles Eisenstein says we have been raised in the age of separation. I’m pretty sure he’s talking about the zealous individualism that’s the bedrock of American Exceptionalism.
We’re raised to avoid needing others or having them need us. Why depend on someone to help you altruistically if you can just pay for it instead, is the thinking.
Chronic illness then is one of the prices we pay collectively for internalizing doom and separation. We have artificially and detrimentally separated our bodies from our minds, our hearts from our habits, and our core identity from our values. We believe that individuals alone are responsible for their fate, which is why those who can’t contribute economically are dismissed rather than cared for.
Not only is this morally false, but chronic disease is a growing threat. It is directly related to individual health habits and stress, and it comprises 71% of deaths each year. (WHO, 2018) Ignoring the relevance of individual wellbeing to society is killing us.
Chronic fatigue as a metaphor for the ills of society is clear to me; but with no consensus on treatment and in the face of changing medical paradigms altogether, it’s the path back to my personal health and functionality that I don’t see. Yet, that’s obviously what I need the most.
My Own Personal 2020
Unlike inspiring stories I’ve seen by others, chronic fatigue is so far not my clarion call to wellness. I know it would help if I felt this way, but I feel neither grateful nor enlightened.
Rather, it’s more like I’ve been given yet another health challenge in a lifelong series that I inherited with snowballing interest. I know I have privileges to be grateful for, as well as tools to help me through, but still, I am disappointed, as I’m sure many in my shoes or worse are too.
I was not living out of balance or ignoring my spirituality when this came along and busted me on my ass. I was already focused on living my authentic truth in connection with universal energy and my own core values. I was already a Paleo, organic, meditating, supplement-gobbling, certified functional health coach with intentional parenting, organized religion, some modicum of community, and a host of other good practices and intentions.
Having co-founded a really cool pro bono project to help others with chronic illness in the face of COVID-19, I was fighting the good fight in so many ways. I thought I had what I needed to prevent a deepened state of ill health and yet I’m here anyway.
It’s just more 2020.
Until this year, I had devoted my multi-faceted career to human rights, as well as public and personal health. Yet, despite my efforts across decades, borders, and communities, I find myself not only ill but living as a foreigner through a global pandemic and watching my homeland fight its first fascist government in history. This will impact us all negatively for years to come. And it’s not even over yet.
Non-attachment is a requisite survival tool but beyond that, who can take any of this personally anymore?
What I’m struggling with most is my lack of control in all directions. I thought I knew about fascism, but it was never personal before. I thought I was prepared to weather the storms of ill health through habit, lifestyle, and mindset, but having good tools makes my navigation no less choppy.
I thought I was healthy enough to avoid this shit altogether, that I had paid enough of my dues on the chronic health front, but apparently there’s more dues to pay and more work to be done.
It’s taking some getting used to but at the moment my input isn’t that clearly affecting the outcome of my health. I haven’t yet slept, eaten, thought, or worked my way out of this.
So — — PLEASE — — how DO I get out???????
Bridging the Gap Between Hope and Reality
This month, in my health coaching group, we’re talking about hope, efficacy, resiliency, and optimism. It’s a heavy lift for me.
I’m optimistic about my ability to committed action, even when that means staying in bed and operating on a ridiculously compromised schedule, and even though I keep procrastinating my start date. I know I’ll eventually do my best.
But, having been round the chronic illness block in concentric, ever-widening circles since a young age, I’m less hopeful about an outcome I can’t see. Since efficacy is defined as “the ability to produce a desired or intended result,” I’m forced to adjust my intended result.
Chronic fatigue robs you of that which capitalism teaches you is your birthright, the right to hustle your way upwards.
“The only way out is through” has permanently replaced “the only way to go is up” as my working motto, as has “process not perfection”, and still, I know there’s more for me to learn.
Just as I was raised on doomsday, I also grew up to Stevie Miller’s “Fly Like an Eagle,” the Beatles’ “Revolution,” and other psychedelic rock classics. While they may have stemmed from drug induced euphoria, they also cemented in me a natural belief in change.
I really don’t yet know my way out, but I do agree with Einstein, “we cannot solve our problems with the same thinking we used when we created them.” Just because I can’t see my path to healing, doesn’t mean it’s not already there.
So, for now, my main act of hope is to study up on patience and think about how being more patient with myself in this moment might open up some doors.
If you’ve got any suggestions or reflections that might help, I hope you will chime in via the comments.