But You Don’t Look Sick" – Living with CIDP
- Justin Hurtado
- Feb 6
- 5 min read
Updated: May 11
Featuring:
I remember the first time someone told me, "But you don’t look sick." It wasn’t said maliciously, but those words cut deep. They still do. Because the truth is, just because you can't see my illness doesn’t mean I’m not fighting for my life every single day.
I was given two years to live. That was ten years ago.
I’ve been through more than I ever thought possible: months in the hospital, four comas, high-dose dexamethasone treatments that left me feeling like a shell of myself, physical therapy, occupational therapy, and a relentless fight to keep moving forward. I’ve lost friends, family, and the life I once knew. But here I am. Still breathing. Still fighting. Still proving that just because I don’t look sick, it doesn’t mean I’m not living with a relentless, degenerative illness that tries to take something from me every single day.
This is my story. And if you’ve ever felt unseen in your own battle, I hope you see yourself in it too.
The Diagnosis That Changed Everything
Before CIDP, I was just… me. A regular person, living life, working, dreaming, laughing. Then the numbness started. The weakness crept in. I ignored it at first—who wouldn’t? We chalk up so much to stress, bad sleep, or just “getting older.” But my body knew better.
By the time I was diagnosed with Primary Progressive CIDP (Chronic Inflammatory Demyelinating Polyneuropathy), my world had already shifted. CIDP is an autoimmune disorder where my immune system mistakenly attacks the protective covering around my nerves, causing weakness, pain, and loss of function. It’s progressive—meaning it only gets worse over time. And there’s no cure.
I was given two years to live.
When someone hands you an expiration date, it does something to your soul. It’s like the whole world tilts on its axis, and suddenly, nothing makes sense anymore.
But I wasn’t ready to go. And I damn sure wasn’t going to let CIDP define how my story ended.
Fighting for Every Step
Living with CIDP is like being trapped in a body that betrays you at every turn. Some days, I can move with a little effort, using a walking stick or crutches. Other days, I need my wheelchair. And then there are the days when I don’t get out of bed at all—because even lifting my head feels impossible.
The treatments have been brutal. High-dose dexamethasone, a steroid that’s supposed to help, also made me gain weight, gave me mood swings, and made my body feel alien. The IVIG infusions, which help slow down the immune attack, sometimes work… and sometimes don’t. Physical therapy is a lifeline, but it’s also exhausting. Every session reminds me of what I’ve lost—and what I’m still fighting to keep.
And then, there were the comas. Four times, I came so close to the edge. Four times, my body shut down, and I had to claw my way back to the surface.
CIDP doesn’t just affect my muscles—it affects every part of my life. The things people take for granted—getting dressed, making a cup of coffee, walking from one room to another—can feel like climbing a mountain. And there’s no summit, just an endless incline.
Loss—And Learning Who Really Shows Up
Illness is a filter. It shows you who’s really in your corner—and who never was.
I have lost friends. I have lost family. Not because they died, but because they left. Because they couldn’t handle it. Because I stopped being convenient. Because they didn’t believe me when I said, I am sick, even if you can’t see it.
And you know what? That hurt more than the illness itself.
People don’t like what they can’t understand. They want neat, packaged versions of sickness—where you either "get better" or you "die." But chronic illness doesn’t work like that. It lingers. It changes. It forces you to live in a gray space that most people would rather ignore.
But for every person who walked away, there were those who stayed. Those who held my hand when I was too weak to lift it. Those who reminded me who I was when I forgot. Those who saw me—not just my illness, not just my wheelchair, but me.
And that? That’s everything.
Finding Strength in the New Normal
There was a time when I fought against every change, every mobility aid, every new reality. I hated my wheelchair. I hated my walking sticks. I hated the idea of needing help. Because needing help felt like losing.
But I’ve learned that accepting help isn’t weakness—it’s strength.
My wheelchair gives me freedom. My walking stick gives me stability. The people who love me give me purpose. And my own damn resilience? That gives me everything else.
I still have bad days. Days where the pain is too much, where the frustration eats away at me, where I cry over the life I lost. But I also have good days. Days where I laugh so hard my stomach hurts. Days where I find joy in the smallest moments. Days where I remind myself: I am still here. I am still fighting.
What I Want You to Know
If you’re reading this and you’re living with CIDP, or any chronic illness, I want you to know:
You are not alone. I see you. I hear you. I believe you.
Your pain is real, even if others don’t understand it.
You are allowed to grieve. You are allowed to be angry, sad, frustrated.
You are still you. Your illness does not define you.
And if you’re someone who loves a person with a chronic illness, here’s what I need you to know:
Believe them. Even if they "don’t look sick." Even if you don’t understand.
Show up. Even when it’s inconvenient. Even when it’s hard.
Be patient. Their fight is exhausting. Your support means everything.
Still Here, Still Fighting
It’s been ten years since they told me I had two left.
I’m still here.
I don’t know what tomorrow will bring. I don’t know how much longer I have. But I do know this: I am going to keep living. Keep laughing. Keep fighting.
Because I am more than my illness. And just because I don’t look sick… doesn’t mean I’m not strong as hell.
And if you’re fighting this battle too?
So are you.
Resources for CIDP Support:
If this story resonated with you, share it. Let’s make sure no one fighting CIDP ever feels invisible again.
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