When people ask what I got up to over the weekend, I’ll be honest: I appreciate the friendly intent, but I don’t like getting into that conversation. I usually say something vague like “not much” or “the usual,” then try to steer things toward what the other person did. Because the truth is, I don’t enjoy talking about my weekends. Most of the time, they consist of sleep and a handful of absolutely necessary tasks like laundry or grabbing groceries—just enough to get me through the coming week.
If I respond honestly and say, “I slept through most of it,” people tend to misinterpret what that means. I’ll get replies like “that sounds nice” or “must be good to relax,” and I have to bite my tongue to stop myself from blurting out, “No, it’s SHIT.”
There’s such a huge gap between sleeping because you’re tired and sleeping because you’re fatigued. The first can be lovely. You’re exhausted from a day well spent, you’ve got a comfortable space, no noise, no stress. You wake up refreshed, clear-headed, like you’ve popped a potion to restore your mana. It’s restorative in the truest sense and in that moment you feel like you can take on the world.
But when you live with an energy-limiting condition, sleep doesn’t work that way. It doesn’t replenish you. It doesn’t reset anything. Take today, for instance: I slept for fourteen hours and still woke up feeling wrecked. I had to take something for the pain and gather myself just to make it to the bathroom before crawling back into bed. This is not restful, it is not restorative. It’s more like being unconscious through a marathon and then waking up just in time to run another.
What’s harder than the fatigue itself is knowing how little understanding there is around it. Most people can’t distinguish tiredness from fatigue, and because of that, kindness is rare when you open up about these parts of your life. Not everyone reacts poorly, but in my experience, dismissive or derisive responses are far more common than empathy. There’s a bitterness in the tone of those who think you’re just being lazy, as if your need to rest is some kind of moral failing. And there’s little point trying to argue otherwise with someone who’s already decided that the survival strategies you employ to get through the week are signs of weakness or laziness.
If your fatigue is temporary—say you’re adjusting to life with a new baby or you’re under pressure from a big project at work—people will usually cut you some slack. But if it lingers just a little too long, if you don’t “bounce back” quickly enough according to some unspoken, ever-shifting standard, resentment often starts to seep in.
Productivity is so deeply tied to our sense of worth under capitalism that anything perceived as a threat to it becomes suspect. In order for capitalism to thrive, we’re expected to be constantly producing, constantly contributing. And when someone appears to fall short of that, it’s often their peers, acting on internalised capitalism, who are the first to call them out. But it’s the system itself which devalues us all, whether we are seen to be contributing at a high clip or struggling to meet systemic demands.
As someone living with energy limitations, even casual questions about how I spend my time can feel loaded. They may sound kind, even neutral on the surface, but they carry an edge, a weight. Because I know what’s really being asked: why aren’t you doing more? Why aren’t you normal? Why is something as basic and biologically essential as sleep not enough to fix you?
When sleep stops being restorative, it calls other things into question too. It makes the ordinary feel strange and unreliable. What happens when the one thing we’re told should bring rest and recovery doesn’t do that at all? What does that mean for everything else?
It’s a frightening place to find yourself in, and it’s something everyone dealing with fatigue has to face early on—whether their condition is permanent or temporary. It’s like being told that down is now up. Your brain scrambles to make sense of this new reality, trying to apply a completely different logic to things that used to feel simple. And if you push back against it too hard, you pay for it both physically and mentally. So you start to build survival strategies, anything that helps you function even an iota closer to how you did before.
Being able to sleep for an extended period when your energy is low might sound basic, but it’s a privilege not everyone has. I certainly didn’t, especially in the early years of my diagnosis, when I was doing shift work and living on a balcony—circumstances I’m still paying for today. Coping strategies like rest shouldn’t be luxuries. They should be the baseline support everyone has access to when they need it.
In an ideal world, fatigue would be taken seriously. Questions about how we spend our time—how much or how little we manage to do—wouldn’t carry that sting of judgement. But until we get there, I’ll keep dodging weekend small talk whenever I can. And if I can’t avoid it, please understand that even if my answer sounds casual, it’s actually brushing up against something raw. I wish I could say I went hiking or saw a concert, I really do. But I can’t pretend my life is anything other than what it is, an existence where down feels like up, and sleep no longer restores the way it should.