WTFatigue?

Here’s how we cope with bone-deep lethargy.

Credit: Annie Spratt on Unsplash

Welcome to Solicited Advice, our weekly column that celebrates the helpfulness in health. Because in a world where strangers at the grocery store love to tell you that a specific brand of magnesium will indeed “cure” what ails you (it probably won’t, so sorry), we’re all about passing on our lived experience in a way that makes your life a little better. Are we experts? Nah, not really. But we’re great listeners who have perfected the art of pillow screaming. Let’s get into it!

Chronic fatigue is one of my most crushing symptoms. No amount of napping or lying on the couch recharges me, and I often find it really hard (and frustrating) to explain to others. How do you cope?

Kat: I’ll start us off by saying that chronic fatigue is grossly underestimated and greatly dismissed amid the able-bodied population. Why? Because no one is immune to being tired, which makes everyone feel like they totally understand, because it’s impossible to be a human being and not experience exhaustion in some form of another. But it’s not the same as chronic fatigue because non-disabled tiredness usually has a cause: not sleeping well, late-night cramming because of a school or work deadline, or being a new parent. Chronic fatigue, on the other hand, is simply a state of being for many spoonies — it’s not the consequence of an action, but rather the price of existing. It’s bone-deep. It’s the feeling of sleeping 10 hours but already needing a nap after brushing your teeth. It’s debilitating brain fog. It’s the inability to feed yourself because you don’t have the energy to make it to the kitchen.

One of the biggest accommodations I’ve had to make in my life — thanks to chronic pain, chronic fatigue, and my immune system — is in how I pace my days and dose out my energy. I call it the mathematics of being chronically ill. For example, if I make some type of social plans for a Sunday, I minimize my obligations for a few days leading up to it (so, one day of fun = multiple days of pre- and post-plan recovery). I also build in some non-negotiable days in my schedule where I don’t leave the house, which means I often stack medical appointments in the same day as opposed to spacing them out. (I also work from home which makes this very doable.)

Another thing I’ve worked hard on is being very upfront with my support system about the consequences and tradeoffs of pushing myself past my limits. For instance, if my partner needs me to run some errands for him, I’ll gladly do it. But at the same time, I make it clear that I won’t be able to X, Y, or Z (e.g., cook the dinner I was planning to) if I do. It took a few years of these types of conversations, but now the people around me are actually the ones who give me a taste of my own medicine and firmly tell me not to push myself because of what the consequence might be if I do.

P.S. A helpful resource, especially for self-analyzing your fatigue and communicating it to doctors, is the Bell CFIDS disability scale. I sometimes find it difficult to non-emotionally describe my fatigue (because apparently “It’s ruining my life!” is not descriptive enough) and its effect on my day-to-day, and this series of statements has been really helpful to not only put the feelings into words for myself, but also my care team.

Jess: So we’re all just out here rawdogging chronic fatigue until we collapse, right? Did I wake up like 12 minutes before therapy when I meant to wake up early enough to take a shower? Do I frequently not even hear my alarms, or find screenshots of my alarm in my photo albums hours later? Do I sometimes just hit a wall and can barely get myself into bed because I’m so exhausted? 😅

I have a frustrating ability to fall asleep pretty much anywhere, anytime, if my brain isn’t otherwise engaged or if I lie down. (Except at bedtime or when I want to sleep, which is annoying.) Often, it doesn’t matter how much my brain is engaged, I’m still battling exhaustion. In school, I used to fall asleep regularly in classes regardless of how well I was sleeping or how interested I was in the class. I would pound caffeinated drinks in hopes of making it through a class and have everyone I knew (but mostly my mom) calling me nonstop to make sure I could get up. While some of that has alleviated with age and better coping skills, left to my own devices with no alarms or pressing reasons to get up, I will sleep 12+ hours regularly. And I will still be tired.

I was diagnosed with chronic fatigue after a bout of mono in middle school (from sharing a drink with a friend who didn’t realize it was contagious and so didn’t mention she was sick) and it seems most of my diagnoses since come with a side of fatigue — including long COVID. Yet, because it is my baseline, I still often forget how much it impacts me until I push myself too hard. This also means I’m pretty terrible at talking about it, because I so often simply don’t.

Because I exist in a larger body, people often bring up sleep apnea instead of accepting my chronic fatigue diagnosis. “You should get a sleep study!” I mean, OK, but I don’t have symptoms other than chronic fatigue (except when I’m congested or eat something I’m allergic to!) and I’ve discussed it at length with my doctors. I’ve praised my Oura Ring previously, but it’s also been really helpful in showing that my sleep (and breathing) aren’t being disturbed — it really is the chronic fatigue causing my… chronic fatigue.

All of which is to say, what has helped me the most, aside from a lot of the same stuff Kat mentioned, is a) accepting my diagnosis, b) talking to other people who also live with chronic fatigue, and c) ignoring it when people don’t get it. My energy is limited, so if they wanna argue my diagnoses and lived experiences, they can go talk to the wall.

Ash: Recently I was complimented on how I was able to continue on and on working at the same pace and never seem to need to stop. I admitted that it was entirely due to how I rationed my energy for the day so that I could survive through it — and how I had to plan for it, not just pound some caffeine and expect it to be there.

Because that’s how someone with chronic fatigue has to look at things, considering energy as a finite resource that factors into planning alongside things like food and travel. Fatigue isn’t just ‘my body is tired’ — though it definitely can include that — but really everything is powered down and in ‘essential function only’ mode. You’re awake, but your body is moving slower, and so is your brain, as it feels like you’re mentally trudging through molasses.

For me, those heavy fatigue days can often be offset with careful planning that prioritizes lots of downtime and rest, but that isn’t able to account for when it strikes alongside acute sickness or other unpredictable factors happening in my body or influencing me from the outside.

Here are a few things that help me cope:

1. Attempt to accept it. On really hard days this may feel or be impossible, but beating yourself up over it will give you less energy, not more.

2. Pay attention to your routine and what impacts your energy. If you are living with someone, see how you can divide responsibilities to offset energy loss. If you are living alone, sort responsibilities by energy level and make a plan to tackle the hardest ones.

3. Prioritize low-energy commitments. While I do love to go out and have an adventure, I can plan for fewer of those than I can low-energy hangs. That’s not to say don’t plan for those high-energy events, but do recognize their impact may last the days surrounding the event as you need for recovery.

4. Prepare for the unexpected. This will look different for everyone! For me, it’s looking up options for food around me, defining rest times, and finding some space for alone time to reduce stimulation.

Here’s an extra spoon if you need it today: 🥄

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