For the past two weeks, I’ve been living in a fog so thick it feels impossible to escape. I’m usually up by 7 or 8 in the morning, ready to tackle the day. But lately? I’ve been sleeping until noon. Even after hours of sleep, my body feels like it’s carrying the weight of the world. The simplest tasks—brushing my teeth, making the bed, even just walking from one room to another—feel monumental. My battery is dead from the moment I wake up.
I get through work somehow, but by the time I come home, there’s nothing left. My energy is tapped, my body aches, and all I can think about is laying down and staying still. Some nights, the thought of chewing a meal is so overwhelming I’d rather skip dinner than put in the effort. It’s not that I don’t want to eat. It’s not that I don’t know I need the nutrients. It’s just that everything feels like too much.
And here’s the thing: it’s not just the physical exhaustion. It’s the mental toll of feeling like I can’t keep up. My partner doesn’t fully understand what I’m going through. I hear things like, “You’ve got to push past it” or “You’ll feel better if you just get moving.” I know they mean well, but it stings. I’m already pushing every single day. Pushing to get out of bed. Pushing to show up. Pushing through pain that most people can’t see.
What I wish I could explain is that this isn’t laziness. This isn’t a lack of drive or motivation. It’s lupus. It’s the unrelenting fatigue that comes with living in a body that’s constantly battling itself. My energy isn’t limitless; it’s a fragile resource, and when it’s gone, it’s gone.
When I say I’m tired, I’m not talking about the kind of tired a nap can fix. I’m talking about a bone-deep exhaustion that feels like trying to sprint through quicksand. It’s an exhaustion that steals my ability to enjoy the things I love, to spend time with the people I care about, and even to nourish my own body.
I want my partner—and anyone else reading this—to know that I’m not giving up. I’m not taking the “easy way out.” I’m surviving. Some days, that’s all I can do. And if you’ve ever been here, in this same space of exhaustion and pain, please know you’re not alone. It’s okay to rest. It’s okay to prioritize stillness when your body is screaming for relief.
To those who love someone with chronic illness: please believe us. We’re not lazy. We’re not unmotivated. We’re doing the best we can with the energy we have. Sometimes, all we need is for you to sit with us, to understand that what we’re going through is real, and to remind us that we’re still whole, even when we feel broken.
Warriors, I know how heavy the world can feel when lupus is pressing down on your chest. I see you. I feel you. And together, we’ll find a way to keep going—even if all we can do today is breathe.
