Most people see the bed first. That’s what defines me to them. The bed in the living room, the fact that I’m always in it. When they picture me, they don’t picture me out in the world, they picture me here.

Still. Sick. Limited.

And I get why. From the outside, that’s what it looks like. But there’s a lot more here than what people see at a glance.

From this same bed, I’m building something. I’m working on a community initiative through KCareConnections, pulling together resources and organizing them so people who are struggling can actually find help. We already have over a hundred resources and growing, and I’ve had volunteers contribute to it. That didn’t happen because I gave up. It happened from right here.

I mentor people. I answer messages. I try to show up for others in whatever way I can. Even on the worst days, when my body is not cooperating, I am still trying to give something back. I’m also a professional writer. I’ve published articles, and I’m still trying to find work, still pushing, still trying to contribute in a world that does not always have space for someone like me.

I’m working toward another college degree. I homeschooled my son. I’ve built a life and a sense of purpose that exists beyond what my body can physically do, even if most of it happens from this bed.

But the bed is what people notice.

And then there’s the part that is harder to explain. Sometimes people look at me and think, well, you’re not paralyzed, so you should be able to stand for a few seconds, take a few steps when you need to, sit up more than you do. And from there it turns into questions. Why the wheelchair? Why the bed? Why not just push through it?

What they don’t see is that my body doesn’t work the way it’s supposed to. I live with a rare form of autonomic failure that throws off my heart rate and blood pressure so badly that being upright isn’t just uncomfortable, it’s dangerous. I’ve passed out. I’ve had seizures. I’ve fallen and been injured. Staying upright too long is not about willpower, it’s about risk.

And that’s only one part of it. There’s the autoimmune side, the extreme weakness, the joint swelling and pain, and the kind of exhaustion that doesn’t get better with rest. There have also been neurological events, past TIAs, and at one point a small stroke that left lasting effects and required physical therapy.

Then there’s something people almost never understand unless they’ve lived it. My GI system doesn’t move the way it should. I have severe dysmotility, so things don’t pass through normally. Pressure builds up, fluid builds up, and my body has to find a way to release it. I deal with ongoing drainage from my feeding tube, stomach and GI contents that are constant and often very irritating to the skin. It’s painful, it’s messy, and when I’m upright, even for short periods, that pressure increases and everything gets worse very quickly. Lying down is not a preference. Sometimes it’s the only way to keep things even somewhat under control.

There’s also the skin sensitivity to sunlight, the medication restrictions, and just the reality that even something that sounds simple, like leaving the house, is not safe or manageable for me.

So when well intentioned people say something like, could a caregiver help get you into a car and take you for a ride, I understand where that comes from. It sounds simple. It sounds reasonable. But in my case it’s not just difficult or uncomfortable, it’s not possible and it’s not safe. What that suggestion doesn’t show is everything behind it, what it takes just to sit upright, what happens when my body can’t regulate the way it should, what builds up internally when I’m not lying down, and the very real risk of passing out or my body just not tolerating it at all.

I live with complex, rare conditions that go beyond what most people, and even many doctors, typically see. People like me are sometimes called zebras in medicine. We exist, but we’re on the fringe, and what we deal with doesn’t always fit what people expect illness to look like. So what sounds simple on the outside can be physically impossible on the inside. It’s not that I don’t want to go. It’s that I truly can’t.

And that difference matters.

What’s hardest isn’t just the physical reality, it’s how easily it can be misunderstood. Most people mean well. They really do. But when you haven’t lived this, it’s hard to understand what it takes just to get through a day like this, or why something that sounds simple might not be possible. There ends up being a gap between what people see and what’s actually happening, between what seems reasonable from the outside and what my body can realistically handle.

But this is where I am. And it’s not for lack of trying. I listen to my doctors, I follow recommendations, I try things, they try things, we’ve tried things. I push when I can, and I pay for it when my body can’t keep up. This isn’t me choosing the easier path. This is me living within the limits of a body that doesn’t give me many options.

And despite everything, despite the limitations, the setbacks, how much has been taken, I’m still here. Still trying. Still fighting to have a life that means something. I am strong. I am ambitious. I think what I’ve built from this bed proves that, even if it doesn’t always look the way people expect it to.

Because when you’re not out in the world, when you’re not moving through it in visible ways, people don’t always see the effort behind it. But that doesn’t make it any less real.

This is my reality. These four walls. And instead of letting that be the end of my story, I’m choosing to build something meaningful within them. I’m choosing to create a life, to contribute, to connect, to matter, even from here.

I don’t need people to pretend I’m fine, because I’m not. But I do need people to see me fully. Not just as someone who is sick, not just as someone in a bed, but as someone who is still showing up in the only ways I can right now, still trying, still contributing, still here.

Meet me where I am. Not where you think I should be, not where you wish I could be. Here. Because even here, there is more to me than what you see.