When Your Body Fails the Math Stops Working

TL;DR: Four years of chronic pain taught me the real problem with inspiration stories: they hide reality. People in pain don't need victory laps. They need presence without expectation.

What people with chronic pain need:

• Someone to be present without needing anything back

• Stories showing reality, not just highlights

• Space to exist without feeling like they're failing

• Time to recover energy without guilt

What Chronic Pain Looks Like

I look normal sitting across from you at dinner.

I'm shifting in my seat every few minutes because my fistula pain won't stop. I'm trying to focus on what you're saying but there's this constant noise in the background that won't go away.

It's painful.

I'm doing the math in my head: how long until I leave without seeming rude, how much energy I have left to ask you questions, whether I'm being a good enough friend right now.

I've been doing this math for four years.

Why Inspiration Stories Miss the Point

Social media shows the finish line. The moment someone crosses the marathon finish line or wins the tournament.

What gets left out is the reality behind it. The struggle. The pain. The days you don't get off the couch.

I post about playing professional pickleball with Crohn's. I try to share the hard parts too: how isolating it feels, how it's an ongoing battle, how there are weeks where my fistula pain makes everything harder.

The reality. Not the highlight, but the whole picture. That's what's missing.

When you're trapped in a cycle of pain-analgesia-fatigue-lethargy, you don't need someone's victory lap. You need to know you're not alone in the struggle.

Bottom line: Inspiration without reality adds isolation.

How Pain Teaches You to Disappear

I've taught myself to isolate when the pain gets bad.

It happened gradually. Someone would expect me to check in, to ask about their day, to be present for them. I was in survival mode.

When I'm struggling with fistula pain, I don't have a whole lot to give. I'm not thoughtful and kind and patient. I'm not putting others first, which is what I naturally want to do.

So I learned: if I'm going through pain, I'm going to let somebody down.

Easier if I don't put anybody through that. I deal with my own stuff solo.

It's sad writing that and saying it out loud.

What this means: Chronic pain doesn't just hurt your body. It trains you to hide.

Why Relationships Feel Impossible

When your body fails, relationships become transactional.

Not because you want them to be. Because you're not meeting the unspoken terms.

There's an expected value exchange in relationships. You're supposed to give back. You're supposed to ask how someone's doing, check in on them, be present for their struggles too.

When you're depleted, when you've spent everything trying to manage your own pain, you don't think past it. You have nothing left.

That feels like failing at being a good partner. A good friend. A good person.

Research shows improvements in social isolation lead to improvements in emotional and physical functioning for people with chronic pain. How do you maintain connection when you have nothing left to give?

The reality: Pain depletes your ability to reciprocate, which feels like failing at being human.

What Presence Looks Like

My friend Sean visited me in Hawaii in early 2022, right when my symptoms started.

We'd been to Hawaii together before. This time I couldn't get off my stomach. I was in so much pain I couldn't leave the condo.

Sean went and did his own thing. He didn't pressure me. He didn't seem bummed that I couldn't do much.

That's what I needed.

To feel like I was okay being exactly how I was, without feeling like I was letting anybody down.

Simple truth: Presence without expectation is the most helpful thing you do for someone in pain.

What Actually Helps

I've forgotten how to live without pain.

Four years now. I've forgotten what it's like to have energy that isn't rationed, to show up for someone without doing the math first.

I think I'm a thoughtful person. But I don't have the bandwidth to be that person right now.

Maybe that should be okay.

When Sean visited me in Hawaii and Florida, he didn't need me to be anything. He was just there. That's what made the difference.

Not inspiration stories. Not stay positive. Just someone sitting with me who didn't need a receipt.

Is that selfish? I don't know.

But after four years of coming up short, I think presence without expectation might be the only thing that actually helps when your body fails.