When Your Body Makes the Decision for You

Sometimes Missing Out Isn't Really a Choice

I’m not going to the Blueberry Festival this year.

That sounds like a simple decision. People skip events all the time. Plans change. Maybe you’re busy, maybe you don’t feel like going, maybe something else comes up.

But sometimes, when you’re disabled or chronically ill, not going isn’t really a choice in the way people think it is.

Sometimes your body makes the decision first.

That’s where I am this year.

I would like to go. I would like to wander around, see everything happening downtown, eat something good, be around the crowds and the noise and the weird little traditions that make a local festival feel like a local festival.

But wanting to go and being able to tolerate going are two different things.

And lately, my body has been very clear about the difference.

The Part People Don't See

A lot of disability happens in the calculation before anyone ever sees us.

It’s not just:

“Can I go to the festival?”

It’s:

• Can I get ready without using up most of my energy?

• Can my body tolerate the heat?

• How long can I safely be upright?

• How much walking, wheeling, transferring, noise, and stimulation will there be?

• Will I have access to somewhere to rest?

• What happens if my symptoms spike while I’m there?

• What will this cost me later today?

• What will this cost me tomorrow?

That last question matters more than people realize.

There are plenty of things I can technically do.

I can push through.

I can override what my body is telling me.

I can get through an event and even look relatively fine while I’m doing it.

But being able to physically survive something and being able to do it without a major consequence are not the same thing.

"But You Could Go for a Little While"

This is one of those ideas that sounds reasonable until you live in a body with limited and unpredictable capacity.

Sometimes “just going for an hour” still requires getting dressed, getting out of the house, traveling there, navigating accessibility, tolerating sensory input, managing symptoms, and getting home again.

The hour is rarely just an hour.

And the cost doesn’t necessarily end when the event does.

For someone living with chronic illness, dysautonomia, pain, fatigue, or sensory overload, the recovery can become part of the event too.

That means every yes comes with a calculation.

Not because I’m afraid to live my life.

Because I’m trying to live it in a way my body can actually sustain.

There Is Grief in Letting Your Body Decide

I think this is one of the quieter kinds of grief that comes with disability.

There are the big losses, the obvious ones.

And then there are things like a summer festival.

A place you would have gone.

Something you would have done.

A tradition that suddenly requires more planning than it used to.

A day where everyone else seems to be out living normally while you’re at home because your body needs something different.

Those moments can look small from the outside.

They don’t always feel small from the inside.

And I don’t think acknowledging that is the same thing as complaining.

You can accept your body and still be disappointed by what it cannot do.

You can respect your limits and still wish you didn’t have them.

You can know staying home is the right choice and still feel sad about missing something.

Both can be true.

Acceptance Isn't Pretending You Don't Care

There’s a version of disability acceptance that sometimes gets presented like we’re supposed to become completely emotionally neutral about what we lose.

As if accepting your disability means never being frustrated by it.

Never grieving.

Never wishing something were easier.

Never looking at an event you wanted to attend and thinking, “I hate that I have to miss this.”

But acceptance doesn’t require pretending.

For me, acceptance has looked more like learning to stop arguing with my body every single time it gives me an answer I don’t like.

It means noticing what my body is telling me and taking that information seriously.

It means using the wheelchair.

Resting sooner.

Changing the plan.

Asking for help.

Deciding something isn’t worth the physical cost even when part of me really wants to do it.

That doesn’t always feel empowering.

Sometimes it just feels disappointing.

But it is still a form of care.

The Difference Between Capacity and Willingness

Disabled people are often treated as though willingness and capacity are the same thing.

If we want something badly enough, surely we can make it happen.

If we don’t go, maybe we didn’t really want to.

If we cancel, maybe we’re unreliable.

If we stay home, maybe we aren’t trying hard enough.

But my body doesn’t run on motivation.

I can desperately want to do something and still not have the physical capacity for it.

That distinction has become increasingly important in my own life.

My limits are not evidence that I don’t care.

Sometimes they are simply limits.

Closing

So I’m not going to the Blueberry Festival this year.

And yes, I’m disappointed.

I’ll probably see pictures from people who went and wish I could have been there too.

But I also know what my body has been asking of me lately.

Less pushing.

More listening.

More respect for what something actually costs me instead of judging myself by whether I can technically force my way through it.

Sometimes living well with disability looks like finding creative ways to participate.

And sometimes it looks like staying home from the festival.

Both are still living.

🌿 If you’re navigating the complicated mix of disability, changing capacity, grief, and learning to listen to your body, I write about those experiences regularly here and in my newsletter. You can also join The Haven, my community space for disability, chronic illness, Reiki, and real-life connection, through the newsletter.