The Cost of Fun: Living with Chronic Illness and Limited Energy

This past week was special: my 30th wedding anniversary and my birthday. For most people, that’s pure fun-a nice dinner, maybe a little trip, a few busy days of celebrating.

For me, with chronic illness, these events come with a price tag most people never see.

If I wanted to keep my symptoms mostly under control, the safe choice would be to ignore the celebrations-stick to my boring daily routine of rest, pacing, and doing very little. But these are the milestones that make life feel like life. They’re the moments that make me feel human.

Some people with chronic illness have no choice. Anything extra is just too much.

Me? I’m… well… “lucky,” or maybe stupid, or maybe just delusional enough to think I can get away with celebrating sometimes. And sometimes I can-but there’s always a cost.

My Energy Bank Account

I like to think of energy like money.

Some people are energy billionaires. You know the ones—they do yoga at 5, go for a run at

6, work a full day, meet friends for a walk, hit a PTA meeting, and then clean the house for fun. They can spend freely without thinking about it.

Then there’s the energy middle class. They can do quite a bit in a day—work, meet a friend, maybe workout, maybe throw in a load of laundry. They end the day tired, but the next morning they’re ready to go again.

And then there’s those of us with chronic illness—the energy poor.

Every day, I wake up with a tiny budget. I might manage two or three things, and then I’m done.

Sometimes I can scrimp and save energy for later, but it’s hard—there’s so little to start with. Other times, I borrow energy from tomorrow to enjoy today—but that energy comes with interest. The bill will come due, and it’s never cheap.

For some illnesses, like ME/CFS, the cost of borrowed energy can be far higher than most people imagine. Pushing too far can trigger a crash that doesn’t just last a few days—it can sometimes lead to a long-term loss of function, making the “debt” nearly impossible to repay. This is why, for some of us, the risk of fun is simply too high.

Borrowing for Joy

For my anniversary and my birthday, I decided to spend.

My husband and I planned a little getaway. Even “splurging” meant careful budgeting, because even when I borrow, I still have a credit limit.

No dancing. No hiking. No late nights.

Maybe… a slow walk. A quiet dinner. A drive. A pretty view.

And that’s what we did. And it was lovely.

I felt human, for a little while.

But when we got home, the bill arrived.

Three days in bed. Migraines. Pain. Nausea. Exhaustion so deep it felt like my bones were heavy.  I felt terrible. I caught myself thinking: Was it worth it?

The Hidden Cost of Fun

Living with chronic illness means constantly negotiating with our energy, deciding what matters most, and carrying the weight of those choices long after the moment has passed.

These small moments of fun—the slow walks, the quiet dinners, the little getaways—are the things that make life feel like life. But for every moment like that, there is a bill to pay.

For some of us, sometimes the cost is worth it.Sometimes the cost is too high, and we have to say no.And for some, the cost is always too high—and that is a reality most people never see.

If you see someone with chronic illness show up to a birthday party, a coffee date, or even just leave the house, remember: it probably wasn’t effortless. Behind every moment of fun is a quiet calculation, a little act of courage, and a price that will be paid long after the fun is over.

That is the cost of fun.