​​The Cost of Showing Up

What’s the first thing that comes to your mind when someone asks if you want to join them for lunch or take a day trip? For most people, it’s checking their schedule, followed closely by deciding what to wear.​
For me, living with a disability, it starts with a mental checklist I wish I didn’t have memorized:

• Will the venue be accessible?
• Will I be in too much pain to enjoy it?
• If I push myself, will I pay for it for days?
• Will there be somewhere to sit if I need to rest?
• If I bring my wheelchair, will it fit? If I don’t, will I make it through?

When I say no, it’s not that I don’t want to be included. It’s that inclusion costs me more than it costs everyone else. And sometimes, the price is just too high.

EVERY OUTING HAS A PRICE TAG
People love to call everyday moments “easy.” Grocery shopping. Running errands. Going to work. But for me, those things are never easy. They’re strategic missions. Every movement carries risk.
My brain is constantly braced, running through a worst-case scenario loop:

• What if I dislocate something in the parking lot?
• What if the floor is slippery?
• What if the checkout line is too long and my legs give out?

All of these things have happened to me. One even led to the titanium rods in my back breaking and over a week of pain from whiplash, just from falling on a wet floor.
Even when I use my wheelchair, which I do to conserve energy, reduce pain, and avoid injury, I still have to scan every environment for barriers. Curbs with no cuts. Heavy manual doors. Shopping carts that don’t work with mobility devices. That doesn’t include the looks I get when I climb out of a handicap-marked car, the people who cut me off because they don’t see or acknowledge the chair, or those who openly stare at my scars.
I constantly have to ask: Is this place worth the risk of being stuck, embarrassed, or needing help?
Then there’s temperature. If a space is too hot or too cold, my body can’t regulate. That triggers migraines, muscle spasms, and joint instability. There are no “casual” environments for me. Only those I’ve calculated as hopefully manageable.
What’s easy for others is tactical for me. What’s background noise to most is front and center in my mind.

THE WEIGHT OF BEING "ON"
Ehlers-Danlos Syndrome is considered an “invisible” disability. Unlike conditions that come with outward indicators, EDS is subtle. It affects the connective tissues in my body, which means I can look fine, even while everything beneath the surface is unstable, painful, and unreliable.
Because I don’t look disabled, people assume I’m okay. So I smile. I laugh. I play the part. Because if I don’t, the questions start. Are you okay? What’s wrong? Are you in pain?
And the truth is yes. I am always in pain. Every hour of every day. There is no off switch. But if I let that reality show, if I wore my discomfort outwardly, it would make others uncomfortable. So I’ve learned to fake normal.
I put on energy I don’t have. I make conversation while my body is on fire. I stay composed when every joint is screaming. Even when I’m present, I’m working harder than anyone realizes just to be there.
It’s not just physical exhaustion. It’s the emotional weight of being “on” all the time. Calculating every movement. Monitoring every reaction. Trying not to stand out while silently fighting to stay upright.
“Pretending to be normal is maddening,” I sometimes want to say. “I’m doing ten times the work just to stay in the room with you.”
But instead, I smile wider and push through. Sometimes, making everyone else comfortable is the easier option. Invisible doesn’t mean easy. It just means people don’t always see the full cost.

THE BUILT OF LETTING PEOPLE DO (OR FEELING LIKE I MIGHT)
When friends, family, or coworkers invite me to do something, I don’t like saying no. Not just because I miss out, but because I feel like I’m disappointing people I care about. But before I can respond, I’m already mentally checking:

• Will the seating wreck my back?
• How much walking is involved?
• Should I take my wheelchair? CAN I take my wheelchair?
• Would everyone have more fun if I didn’t complicate things?

Sometimes, my energy is gone before I even get the chance to participate. Sometimes my answer is no, not because I don’t care or don’t want to go, but because I physically can’t.
But how do you explain that in a text? How do you get people to understand the toll that being disabled in public can take, without making it sound like you’re making excuses or asking for sympathy? How do you tell someone you love that their invitation filled you with dread, not because of them, but because of what your body might do during a day that’s supposed to be fun?
So I cancel. Or I go and pay for it later, because I want to prioritize the people I love. Or I try to explain and feel like I’ve over-explained. And the guilt, even when I know better, still lingers.

THE ONGOING GRIEF OF WHAT ISN'T FAIR
It’s hard to grieve something you’ve never had. But it’s not impossible.
For some, that grief shows up in tears. For others, in silence. For me, it shows up in the quiet realization that my version of life will always be harder. Not necessarily worse, but undeniably heavier.
I watch people jump in the car for a spontaneous road trip, take long hikes on a whim, spend an entire day out without needing to recover. I want that. But I have to plan every outing, schedule rest days before and after, and hope my body cooperates long enough for me to enjoy it.
I dream of a future full of meaningful work, travel, and connection. But every dream starts with a spreadsheet: insurance, energy, access, recovery. I don’t get to be carefree. I get to be careful.
That grief isn’t loud. It’s not dramatic. It’s the grief of always wondering how much I can do before my body says no, and how many dreams will have to bend or break around that answer.

A CALL OF AWARENESS, NOT PITY
I’m not sharing this so anyone will feel sorry for me. I’m sharing it because this is reality for more people than you think. Most of us are just trying to live full, meaningful lives in bodies that demand more from us than most people will ever see.
Accessibility isn’t a favor. It’s a right. And inclusion shouldn’t require performance. I’m not looking to be tiptoed around or treated like a fragile exception. I want to be welcomed as a whole person, someone with limits, yes, but also with strength, humor, value, and purpose.
I’m not trying to be the center of attention. I just want space to be real. To say yes when I can. To say no without guilt. To show up as I am, without having to pretend I’m just like everyone else.
I want to belong in a world that doesn’t always slow down, but one that knows how to make space when it matters.
And if you’ve ever found yourself doing that behind-the-scenes math, quietly weighing the cost of being present, I hope you know this:
You’re not weak. You’re not difficult. You’re not alone.

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