It's Exhausting!
I’m Sick Every Day.
You know what’s harder than being sick every day? It’s when the people you love—your own family—don’t even try to understand what that really means.
I live with an autoimmune disease. That means I am unwell every single day of my life. There is no break, no “getting better,” no “bounce back tomorrow.” This is my life. My normal is exhaustion, pain, unpredictability, and isolation. And still, I try—I show up, I push through, I smile even when I feel like collapsing.
But here’s the part that hurts more than the illness itself: healthy people don’t make the necessary choices to support me. They don’t adjust. They don’t ask. They don’t listen—not really.
It’s especially painful when it’s your own sister.
She always says, “We have to make an appointment to come see you.”
Like I’m a calendar entry.
Like I’m a task.
Like spending time with me is a chore that needs scheduling and fitting in between more important things.
But here’s my reality: there is no “perfect” day for me. There is no day where I’m magically okay. I am sick every day. Every. Single. Day. So waiting for a day when I’m “better” to visit or call or care—it means you’ll never show up.
You’d think that would inspire more compassion. More curiosity. More willingness to ask, “Hey, what triggers your symptoms?” or “How are you really feeling today?” But that doesn’t happen. They assume because I’m the youngest, and because I can sometimes do the bare minimum, that I must be “fine.” That I’m exaggerating. That I’m just being dramatic.
Let me make something clear: I don’t want pity. I want presence. I want connection. I want my family to meet me in the middle, to stop communicating just to be right, and start communicating to actually understand.
Because if you don’t want to take the time to understand me…
If you don’t care enough to ask what my days are like, what my pain feels like, what living in my body costs me—
Then why should I sit and listen to your boring stories?
Why should I pretend to be interested in your everyday gossip or your minor complaints when you can’t even hold space for something that affects every second of my life?
It would mean the world if someone said, “Tell me what it’s like to be you.”
If they asked about my medications.
My triggers.
What kind of emotional support helps.
What kind of days are the hardest.
What I wish people didn’t say.
What helps me feel less alone.
But instead, they distance themselves. They justify. They make it about their own schedules, their own feelings, their own discomfort. And I’m left here, again, carrying all the weight—not just of this illness, but of the silence and misunderstanding that comes with it.
To anyone reading this who isn’t sick, let me say this:
You don’t have to fix me.
You don’t have to solve anything.
But please show up.
Ask the questions. Listen to the answers. Learn what it’s like to live inside a body that betrays itself. And don’t wait until it’s too late to realize that showing up is love in action.
I don’t want to be strong all the time. I shouldn’t have to be.
But I will keep speaking up—because maybe one day, someone will hear me and say, “I see you. I get it now. I’m here.”
And maybe, just maybe, that someone will be the sister I’ve been missing all along.
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