By Kristyna Moore 
There’s a kind of exhaustion that’s impossible to translate.
Not the “I stayed up too late” tired. Not even the newborn, up-every-two-hours kind of tired. It’s something heavier. The kind that settles deep into your bones and makes even the simplest task feel like you’re pushing against gravity.
Living with Sjögren’s syndrome and discoid lupus while raising young kids means carrying a weight no one else can see, and one that’s almost impossible to understand unless you’ve lived it yourself.
The closest comparison I’ve ever found is the first trimester of pregnancy. That overwhelming, all-consuming fatigue where your body feels like it’s shutting down without your permission. Like you could close your eyes at any moment and disappear into sleep, whether you want to or not.
Except this doesn’t pass in 12 weeks.
It lingers. It ebbs and flows. It’s getting eight hours of sleep and still waking up feeling like you can’t possibly put one foot in front of the other. It shows up uninvited in the middle of school pick-ups, dinner prep, and bedtime routines. And no matter how many times you try to explain it, it never quite sounds as real out loud as it feels inside your body.
Because from the outside, everything looks…fine.
The kids are fed. The house is (mostly) functioning. Work gets done. You show up where you’re supposed to. You smile. You push through.
But behind that is a constant calculation.
Do I have the energy to cook tonight, or should I save it for bedtime?
If I push myself now, will I pay for it tomorrow?
Is this a normal bad day or the start of a flare?
There’s an underlying pressure to manage it all the “right way.”
Eat clean. Move your body. Reduce stress. Take the supplements. Stay on top of appointments. Consider medications, or don’t. Track triggers. Avoid triggers. Fix it. Improve it. Control it. As if your body is a puzzle you just haven’t solved yet.
What’s difficult to make peace with is this: I’ve never been a half-effort kind of person. I’ve always shown up fully, 100 percent, no matter what. And now, my body won’t let me. Now, showing up sometimes looks like doing the bare minimum just to survive the day. It looks like canceling plans, missing things, pulling back in ways that can easily be misunderstood. From the outside, it might look like I don’t care. But the reality is, I care deeply—I just don’t have the capacity I once did. And learning that the hard way has been its own kind of grief and battle.
The physical toll doesn’t stay hidden, though. Some days, discoid lupus covers me in bullseye rashes on my arms, legs, and even my face, making it hard to feel like myself, let alone confident. It has also caused significant hair loss, which is why I now wear wigs full-time, something I am deeply grateful for, but also comes with its own emotional and financial weight. Other days, Sjögren’s quietly erodes what you can’t see, like my teeth, now mostly crowns that cost as much as a car. It’s exhausting mentally, emotionally, and financially.
And none of this pauses for motherhood.
There are no sick days from being “mom.” No option to fully rest when your body is begging you to. The needs keep coming. The noise keeps going. The days keep moving forward whether you have the capacity for them or not.
And sometimes, regardless of everything, your body gives out anyway.
You find yourself in bed, not because you want to be there, but because you don’t have a choice. And then you hear it: small footsteps, a quiet voice at the edge of the door.
“Mommy, do you not feel good again?”
They don’t fully understand it. How could they? But they recognize it. They see it. And that recognition, it’s a gut punch. A shot straight to the heart.
Because you want to be the mom who is up, present, doing all the things joyfully. Not the one they associate with lying down, with needing rest, with not feeling well.
And yet, this is part of what they’re growing up with. Part of what you’re learning to carry.
And layered underneath it all is something even harder to say out loud:
The quiet worry.
About your health.
About your body’s unpredictability.
About what this looks like in five, 10, 20 years.
About your mortality.
About being there—or not being there—for all of it.
It’s not always a loud fear. Sometimes it’s just a passing thought you quickly push aside while getting the kids ready or folding laundry. But it’s there.
Always there.
This is the part of autoimmune disease that rarely gets talked about. Not the diagnosis. Not the treatment plans. Not the visible symptoms.
But the invisible, daily negotiation between what your life requires of you and what your body can actually give.
And still, you show up.
Maybe not perfectly. Maybe not with endless energy. But with a kind of resilience that isn’t loud or glamorous—it’s steady. It’s persistent. It’s choosing, over and over again, to keep going in the middle of uncertainty.
Even when no one else can see how hard it really is.
by Erin Burkhardt 
