The Wedding I Was Too Sick For—But then I Danced All Night

That night at dinner, I was lightheaded and too sick to be there. A few hours later, I was dancing an appalling Charleston, and loving every second of it.

This was May 2009, at a wedding my best friend and I had been looking forward to forever. I was her +1. I’d been getting progressively sicker for almost five years by then, and had recently entered what I privately think of as my zombie years: constant migraines, profound exhaustion, and a life that was getting smaller around me.

I remember sitting through the afternoon wedding ceremony already tired. By dinner, I was out of it enough to know what I’d expected before I arrived: I really was too sick to be here.

And then the music started.

Something about the dancing and my best friend’s sheer energy brought me to life. We danced for hours. We laughed. At some point we attempted the aforementioned Charleston, badly. We stayed long after the family and most of the wedding guests had gone to bed, hanging out with the bride and groom’s old college friends.

I felt intensely alive.

I have photographs from that night. There I am on the dance floor, grinning, wrapped around friends, still going late into the night. I don’t look sick.

More importantly, by then I didn’t particularly feel sick.

And I had absolutely no idea what to make of that.

This was 2009. I’d never heard the term post-exertional malaise. What I knew was that something very strange kept happening to me.

I’d eventually feel well enough to do something. I’d go out, see friends, participate in life. Then I’d come home and feel terrible again, sometimes for another week or two. Eventually I’d improve, I’d go out again, and I’d get sick again.

I thought I was catching things. Another cold. Another bug. Something my already overwhelmed immune system couldn’t fight off. It never occurred to me that it was all one pattern of energy production.

Seventeen years later, what interests me most about that wedding is how did the body that was too sick to sit comfortably through dinner get me onto a dance floor for hours? How did I feel so spectacularly alive while I was doing something I was going to pay dearly for later?

How can your body let you do something it can’t afford?

Your body is built to keep you going

Most of us carry around a fairly simple model of energy. You have some amount available. Activity uses it. If you have enough, you can do the thing. If you don’t, you can’t.

Which makes the fact that you did something seem like proof: I did it. Therefore I had the energy. But a human body’s energy system doesn’t work that way.

A working muscle needs a continuous supply of ATP, the immediately usable energy that powers contraction. And the body has several overlapping ways to keep ATP available as demand changes: stored ATP, the phosphocreatine system, glycolysis, and mitochondrial oxidative phosphorylation.

They operate on different timescales and contribute in different proportions as demand changes, but the important thing for our purposes is what they’re collectively trying to accomplish:

The body is built to keep you going.

When I understood that, the wedding looked different. The fact that I danced for hours isn’t evidence that my body was secretly fine. It’s evidence that my body successfully produced dancing.

Those aren’t the same thing.

Producing a performance and sustainably affording that performance are different physiological problems. And thanks to recent Long COVID research, we can now see a piece of that distinction when observing affected muscles recovering from exertion.

Watch what happens after the muscle stops

One study looked at skeletal-muscle energy metabolism in people with fatigue-predominant Long COVID.

To understand what the researchers were watching, we need one more piece of the ATP story. When ATP releases energy, it loses a phosphate and becomes ADP. Phosphocreatine acts as a rapid recycling system: it can donate its phosphate to ADP, turning it back into ATP when energy demand rises.

That makes phosphocreatine particularly useful to researchers. After the demand ends, the phosphocreatine system has to be recharged—and that restoration depends largely on ATP produced through mitochondrial oxidative metabolism. So watching how quickly phosphocreatine returns toward baseline gives researchers a window into how well the muscle’s oxidative energy system is recovering after demand.

At rest, the Long COVID participants didn’t simply look like people with an empty energy tank. Their resting phosphocreatine was actually higher than it was in the healthy controls in this particular study, while resting ADP wasn’t significantly different.

Then researchers exercised the muscle and watched what happened afterward.

In the healthy controls, phosphocreatine took an average of 51.9 seconds to recover. In the Long COVID group, it took 92.5.

Nearly 78 percent longer.

That doesn’t mean people with Long COVID take 78 percent longer to recover from exertion, and it doesn’t tell us that the problem is too little creatine. The Long COVID participants actually began with more phosphocreatine at rest than the healthy controls. The striking difference appeared when researchers placed the system under demand and watched it restore itself afterward.

Look at what the experiment reveals.

At rest, you have one picture. Apply demand and watch what happens afterward, and you get another.

The activity ends. The body’s work doesn’t.

We use rest and recovery almost interchangeably. But physiologically, recovery is something your body has to do.

That helps me understand how a body can successfully produce an activity and still struggle profoundly with what comes afterward.

It doesn’t explain my friend’s wedding, though.

Because I didn’t merely manage to keep dancing. I felt better.

Apparently, I’m not the only one

I initially wondered whether this was adrenaline. Or dopamine. Some temporary neurochemical boost that overpowered the exhaustion.

The research doesn’t support anything that tidy, but the experience itself turns up in PEM research.

In one patient-driven survey of 1,534 people with ME/CFS, 57.2 percent reported what they called an “adrenaline surge” after exceeding their energy limit. For many, it lasted hours. That’s the patients’ description, not a biochemical finding; we don’t know that adrenaline caused the experience.

What interests me is how many people recognized it: I’m doing far more than I normally can, and right now, I feel weirdly good.

PEM itself can be delayed, so how you feel during an activity and the physiological consequences that emerge afterward don’t necessarily happen on the same timetable.

But that still doesn’t answer the question that kept bothering me.

Why was sitting through dinner so hard while dancing with my best friend brought me roaring back to life?

Your muscles don’t know it’s your daughter’s wedding

Your brain does.

Researchers at NIH gave people with post-infectious ME/CFS choices between different levels of effort for different potential rewards. The people with ME/CFS were less likely than healthy controls to choose the harder task.

But increase the reward, and they became more willing to choose it.

Illness changed the effort calculation. It didn’t eliminate reward’s ability to change the calculation.

The laundry is not your daughter’s wedding. Getting dressed for no particular reason is not getting dressed because the friend you haven’t seen in three years just landed at the airport. Walking around the house is not hearing a song you love while your best friend grabs your hand.

Your nervous system knows the difference.

Reward, urgency, emotional significance and social connection can affect the effort your nervous system mobilizes. They don’t make the activity physiologically free.

So I could do it when I really wanted to doesn’t necessarily mean I could have been doing this all along.

Something about that particular moment may have changed what your nervous system could mobilize. That doesn’t tell us what your body could sustainably afford—a body in a PEM cycle can’t afford either activity. But it does have a curious ability to go into debt for something we really want.

Feeling energetic isn’t a fuel gauge

We don’t yet know exactly what produces those strange windows when someone with PEM suddenly feels almost normal.

Maybe some symptoms genuinely diminish for a while. Maybe attention moves so completely into the music, conversation, movement and people we love that bodily signals become less salient. Maybe reward and emotional significance change how much effort the nervous system mobilizes. Several things may be happening together.

But we don’t need to solve that mechanism to see the problem with expecting how I feel right now to be an accurate marker of whether I can do this thing.

Feeling good is real information. It tells you that you feel good.

It doesn’t necessarily tell you what the thing you’re doing is going to cost.

And I want to hang onto this distinction, because if we don’t, those “I feel alive again” hours can start to mean something they never actually proved.

This is where the good days can become evidence against you

If you live with PEM, you may have your own version of my friend’s wedding: the thing you absolutely weren’t going to miss.

And sometimes the cruelest part isn’t that you dragged yourself through it. It’s that for a few hours, you didn’t feel sick.

You laughed. You danced. You stayed too late. Maybe you realized at some point that you hadn’t checked your body in an hour. Then the crash comes, and those good hours can become evidence in the case against yourself.

If I could dance for hours, why can’t I make dinner?

If I managed that trip, why can’t I answer these emails?

If I felt that good when something really mattered, maybe I’m capable of more than I think.

Other people can draw the same conclusion: But you looked great at the wedding.

Yes. You may have looked great. You may actually have felt great.

Neither tells us what the wedding cost.

Pleasure and exertion are different dimensions.

A wonderful evening can still ask a great deal of your body. Enjoying those demands doesn’t make them disappear. And something being important enough for your nervous system to mobilize extraordinary effort doesn’t mean extraordinary effort is sustainably available for ordinary life.

The wedding isn’t evidence that the laundry should be possible.

I wish I’d known that in 2009.

I keep looking at the photographs from that wedding. There’s one of my best friend and me late that night, sitting outside with our arms around each other. We’re sweaty and rumpled and grinning.

I look completely well.

I remember feeling completely alive.

And I remember how baffling those years were—how often I would feel alive again for a few hours, only to get sick afterward and spend the next week or two confused, frustrated, and angry with my body for being so unpredictable.

I didn’t understand that those experiences could both exist in chronic illness, without cancelling one another out.

I do now.

The things that don’t make sense are often where I start.

A lot of my work begins with a contradiction like this one: something your body does that doesn’t seem to fit the explanation you’ve been given—or an experience you’ve never quite known what to make of.

I get curious about those places.

If you’re curious about what it looks like when I bring that same attention to someone’s individual experience, read on for more about how I work.