Survival Isn’t Surviving
Because getting through the day isn’t the same as living.
I used to be proud of how well I could survive.
I was good at it—too good.
I knew how to smile when I was falling apart, how to nod politely when I wanted to scream, how to pretend I was fine when I couldn’t remember the last time I actually was. I wore survival like a damn badge of honor. Every emergency I navigated, every symptom I hid, every moment I swallowed pain so I didn’t make others uncomfortable—it all stacked up into this twisted sense of accomplishment.
Survival became my identity because it had to. There was no applause for falling apart, no support system waiting in the wings. People liked me better when I was strong, when I was managing, when I didn’t make it messy. So I played the part. And eventually, I forgot I was playing. I thought maybe this was just who I was now—someone who gets through rather than lives through. And when people said, “You’re so strong,” I didn’t have the heart to tell them it didn’t feel like strength. It felt like slow-motion drowning.
I knew how to hold it together. Push through. Smile while bleeding.
I learned to perform normalcy with the precision of a stage actress. Wake up. Mask up. Smile on. Get the kids ready. Go to appointments. Advocate when needed. Pretend I wasn’t terrified of the way my body was betraying me. There were days my heart raced out of nowhere, my blood pressure tanked in the shower, my joints slipped out of place while doing nothing but reaching for the remote—and still, I kept going. Because stopping wasn’t an option.
That’s the thing about chronic illness and complex medical conditions like EDS, POTS, and MCAS—you don’t get sick days. You don’t get “pause.” You either keep up or get left behind. And when the world only rewards productivity and palatable suffering, you learn to downplay your own pain just to survive in it. It’s an exhausting, relentless performance. And the most dangerous part? You become so used to hiding it, even you start forgetting how bad it really is.
Survival was my baseline.
I didn’t recognize how warped that was until much later. When you’ve been in survival mode for long enough, it stops feeling like a crisis. It becomes familiar. Normal, even. You forget what thriving feels like. You forget that rest shouldn’t come with guilt. You forget that your body is supposed to feel safe inside—not like a battlefield with no ceasefire.
And for so many of us living with chronic conditions, that survival baseline is all the system allows. We’re told to “adapt.” We’re pushed to be “resilient.” But no one’s handing out actual support, care, or access. We’re expected to function like healthy people while managing bodies that operate on a different rulebook entirely. We’re not asking for miracles. We’re asking to not be punished for existing in the wrong packaging. Survival mode becomes the compromise—and the only thing worse than living in it is the fact that we’ve been told that’s all we’re allowed.
The Lie We are sold
Society loves a sanitized version of suffering. They’ll celebrate your courage as long as you stay quiet about what it costs you. They’ll repost your inspirational quote or share your TikTok about medical gear—but try asking for actual policy change, funding, or access? Crickets. Worse, backlash. Because your story was only palatable when it made them feel good. Not when it made them feel responsible.
“Stay strong.” “You’ve got this.” “Everything happens for a reason.”
These phrases are tossed at disabled and chronically ill people like spiritual duct tape. They’re a poor substitute for real care. They’re designed to comfort the able-bodied, not support the sick. Strength becomes the expectation. Survival becomes the proof. And the second you break, complain, or rage about it—you’re labeled difficult, bitter, dramatic, or attention-seeking.
Let me be blunt: Survival is being used against us. It’s how the system justifies doing the bare minimum. “She’s managing. She doesn’t need help.” No. She’s barely breathing, but she’s good at making it look like floating. That’s not the same thing. But they’ve convinced us to be grateful for scraps—and ashamed of asking for more.
When Survival Becomes a Cage
At some point, I started to realize that survival had stopped being a tool and started being a trap. It was no longer just about getting through a hard season—it became the expectation. My bar for what counted as a “good day” was terrifyingly low. No ER? No fainting? Only moderate joint dislocations? Cool, I’m thriving. Right?
Wrong. That’s not thriving. That’s adjusting your life around pain and calling it peace.
We internalize the idea that wanting more makes us greedy or unrealistic. That if we can function at all, we should be thankful. We start saying things like, “At least I’m not in the hospital this week,” as if that’s the pinnacle of wellness. We start gaslighting ourselves before anyone else has to. And that’s the cruelest part. The system doesn’t even have to silence us—we do it to ourselves, just to cope.
I stopped dreaming. I stopped planning. I stopped believing I could have joy that wasn’t conditional. That’s when I knew: survival wasn’t saving me anymore. It was keeping me small.
The Truth I Had to Learn
It took me years—years—to understand that survival was never meant to be a permanent state. It’s an emergency response, not a lifestyle. But when you live with ongoing illness, trauma, or systemic neglect, it becomes your lifestyle. And undoing that takes a level of self-awareness most people never have to touch.
I had to unlearn so much:
That rest is allowed. That joy isn’t a luxury. That asking for help doesn’t make me a burden. That I am allowed to want a life that feels good—not just one that’s medically manageable. I had to give myself permission to want things again. Big things. Soft things. Free things.
I also had to learn that healing isn’t linear, and sometimes “living” doesn’t look the way I imagined. Sometimes it’s just taking a shower without passing out. Sometimes it’s planting tomatoes even though my fingers hurt. Sometimes it’s giving myself grace for doing less—because less is enough. Because I am enough. And because I’ve already survived more than most people could imagine. I deserve to live now.
The Revolution Is in the Living
You want a rebellion? This is it. Living is a radical act when the world is designed to keep you in survival mode. Living fully, loudly, beautifully—even with a broken body, even with limits, even when it scares people—is a direct middle finger to every system that told you your life was only valuable if it looked like theirs.
You don’t need permission. You don’t need to prove your worth.
You are allowed to chase joy. You are allowed to take up space. You are allowed to be—unapologetically, imperfectly, gloriously human.
This is your life. Not a performance. Not a justification. Not a punchline. A life.
So rest. Dream. Rage. Laugh. Grieve. Start again.
Not because it makes you look strong. But because you deserve to exist outside of survival.
Final Truth
Survival got me this far. And I’m grateful.
But it’s not the destination. It’s not the goal. It’s not the story I want to tell forever.
I want softness. I want rage. I want rest that doesn’t come with shame. I want a life that feels honest—even when it’s hard. I want to build something that outlives the trauma. I want to burn the system down and rebuild it with ramps, beds, port access, patient advocates, and softness at every damn turn.
Because surviving isn’t the goal. Living is.
And I’m done apologizing for wanting more.
