Oh, I don’t know that for certain. But it’s one of those beliefs people with chronic illness (especially the invisible kind) have to face. “Lazy” is right up there with “needy,” “attention-seeking,” “flakey,” and “liar.”
Fatigue is one of the major byproducts of living with most chronic health conditions. The reason is simple: your body is always working harder and you’re never quite comfortable enough to truly rest. Daily events are always more taxing: we have to work harder than a completely healthy person to do the same thing.
Every healthy person knows how they get tired and cranky without a good night’s sleep — or after a day or two of sniffles or a low-grade fever. We quickly get miserable and precious. But it’s qualitatively different when even your best sleep is never quite restorative — and you know that there’s little hope for the next night, or the next after that.
You can get very, very “tired,” but “tiredness” is not “fatigue” or “exhaustion.” Medically, these are different experiences you instantly recognize, if you’ve been there — but otherwise can’t. And once you do, it changes the calculus behind every decision you have to make.
You don’t want to complain. You don’t want to be seen as “different” or somehow “less.” You don’t want special consideration, even though you know that a completely “normal” activity will incur significant costs on the other side.
Others will try to understand, but it becomes frustrating for everyone. If you don’t look “sick,” then others will forget. You want them to forget, because you don’t want to be treated differently; but sometimes you need them to remember, because you know how quickly you can become depleted and how much you will later pay for it. Everyone in your circle is caught in this double bind with you. You feel guilty, but you also know how hard you’re trying.
Over the years, I’ve devised ways around it. I try to work at home as much as I can. Not because I particularly like it, but because, on bad days, getting around and out the door and across the city is draining. I have to use a lot of energy just to get someplace that I could otherwise use on getting things done.
On the days I do work out in the world, I try to stack up as many meetings as I can. Why? Because it efficiently uses those scarce resources that others don’t think twice about committing. We have to become more sensitive to how our bodies use their resources. We have to understand that, while healthy people can “push through” tiredness, the limits of fatigue are far more consequential and must be respected. We have to learn to truly work when we work and rest when we rest.
I can still work 14-hour days — and sometimes do, more than I’d like — but they’re not as productive as my 14-hour days used to be. They require me to become more mindful and purposeful to attain the productivity that once seemed effortless. And they exact a greater recovery cost on the other side.
The catch is that we want others to ignore this until we can’t — because we don’t want to face it, either. That seems pretty “convenient” to an outside observer, yet it can be frustrating and humiliating on this end of it.
But this isn’t about me. I’m willing to hold myself out there as an example because so many don’t feel like they can. Half of all Americans live with a chronic health condition. And even if “fatigue” isn’t part of the official diagnosis (like it is with MS), it’s still a fact of life for most of us.
The modern pace of life is tiring, under the best of circumstances. All of us are so busy putting a good face on it so others won’t judge us as lacking. And half of us have a medical condition that increases the (often unrecognized) challenge.
There are many things we can do to improve the ways we live with fatigue, but I’ll end with just one: all of us will function better if we focus on the task, not the time.
Business is obsessed with time: billable hours, hourly wages, showing up early, and staying late. For many jobs, those are surface measures more about showing that we’re working rather than really getting things done.
Monitor your attention and effort, not your time. Judge one another on the quality of contribution, not time spent in a seat. These are, on the one hand, simple changes in our perspective that would both help all of us get things done — and then release us from those business worries to live the rest of our lives with people we care about and activities that bring us joy and meaning. But, on the other hand, it’s a difficult shift because it goes against the norm and we too easily fall into these superficial judgments.
I’m fatigued most of the time. Maybe you are, too. Maybe it’s something you fear others discovering. It’s something we have to work around. You’re not lazy. Neither am I. But it’s something we need to acknowledge and address, together.
Chronic Cow, LLC delivers science-backed, data-driven, individualized tools and technologies supporting those with chronic health conditions in living well.