Why December Costs More Energy When You Live With Sjögren's Disease

Fatigue isn't a side effect for a lot of people. It's the main event, and it doesn't follow your lab work. Here's where the energy goes in December, why the bill arrives in January, and the one thing that changes how it feels.

We asked the nearly seven thousand folks in our Sjögren's Facebook group what they want from this December. Forty percent said the same thing: they want their energy to feel different this year. Close behind was making it through the holidays without getting sick, without a flare, and traveling without it wiping them out for a week afterward.

Maybe that's you. You're the one still paying for December in the week everyone else goes back to normal. The parties, the travel, the cooking, the late nights, the being on for everyone.

Everyone calls that holiday stress. For a lot of you, there's more to it. It's your immune system, and here's why.

Fatigue is often the main event

Fatigue isn't just a side effect of autoimmune disease. For a lot of people, it's the main event.

In Sjögren's disease, fatigue affects about 70% of people. It's also often the symptom people say is the hardest to live with and the one that affects them most.

Why your labs and your energy tell different stories

Here's the part that explains so much. In Sjögren's, your fatigue doesn't follow how active your disease looks on paper. Study after study has found that how tired people feel doesn't line up with the activity score their doctor measures.

One UK study even found that the most fatigued patients had lower levels of some inflammatory signals, not higher ones.

In plain language: the number on the lab report and the tank you feel in your body are measuring two different things.

So if you've ever sat in an appointment where your labs looked fine and yet you were bone tired, and you left wondering, "Is this all in my head?" It wasn't. I see this time and time again with my patients who are running on empty while their labs look quote-unquote normal, and their lived experience is far from it.

Where the energy goes

Researchers who study fatigue in inflammatory diseases put it this way: energy is reserved for the immune system. Your body takes its share for defense first, and you get what's left over.

That's the key. You don't have no energy. You have less available to you, because some of it is already spoken for.

Why December sends the bill in January

Now drop that body into December, with more events, more travel, less sleep, maybe food that isn't your usual, and more hours of being on. Every one of those draws from the same account. Your immune system already took its cut before you started.

It's the same account you're drawing on when the holiday cold or flu makes the rounds, or when a flare shows up seemingly right on schedule. When the account is already low, there's less room for either, and that's why it shows up later.

December doesn't send you the bill in December. You spend, in December, the energy you really needed for January. You get through the holidays on adrenaline and good intentions, and then the second week of January arrives and you're paying it back. It's an energy budget that was smaller than everyone else's to begin with, spent like it was the same size.

I know this from the inside

I think back to the holiday season before my diagnosis. I told myself I was tired because I had two kids under four. I was getting sick all the time because the kids were in daycare. I wasn't sleeping well, I was breastfeeding, all of it.

But I walked into clinic every day feeling like I had on lead boots, walking through knee-high mud, wearing a heavy backpack. It was the dental hygienist who finally said four words (okay, five): "Your mouth tissues look dry." That moment, the gaslighting I had practiced on myself for years, finally collapsed.

I remember exactly what it felt like to believe change wasn't possible for someone like me. So here's why I'm telling you this now: I just got back from traveling across nine time zones and back again in ten days, and I didn't crash.

I was able to go to the International Sjögren's Disease Symposium in Paris, present a poster, and connect with colleagues from Canada, Australia, South America, all over the world. I came back to Ohio and had the chance to be the face of Sjögren's disease at Mission Week for Amgen, bringing my lived experience as a patient and a clinician, and yours too, so they can do the best job they can creating helpful treatments for us.

And I didn't crash. I actually decided to start running when I got back, which is a story for another episode.

What actually changes it

Here's the trap I see so many capable people fall into, and I've fallen into it too. When something isn't working, we go get more information: another protocol, another plan, another hour researching at 11:00 at night, alone, trying to figure out how to December better.

You're really good at that. You've done so much of the hard work. But more information on your own doesn't change how December feels. You end up with a better plan and the same empty tank.

So what does change it? What changes a person isn't information. It's company. It's accountability. It's doing December with people who get it: people you don't have to explain the fatigue to, people who notice when you're quieter than usual, and who won't make you feel bad for leaving early.

One conversation alone won't do it, although it does feel really good to be recognized and seen. But a year of that kind of company really changes a person. I've watched it happen, and I've experienced it myself.

One thing to do this week

Pick one person and tell them how December actually goes for you. Not the version you post, the real, unfiltered version.

You can say it like this: "December takes more out of me than it looks, and this year I want to plan for that, and I'd like you to know."

That's it. One person, one honest sentence.

Plan for the energy you actually have

Think of your December energy as a budget. Your body already spends part of it on your immune system, and the holidays ask for more than it was built to give. Seeing that clearly is what lets you plan for it, instead of paying it back in the second week of January.

You've done so much of the hard work already. The next step isn't another hour alone with a search bar. It's company, and one honest sentence to one person is a real place to start.

Come plan December with me

What's the part of December that costs you the most energy? Tell me in the comments on the video. I read them, and they help shape what we talk about next.

If you'd like to go into December with an actual plan instead of good intentions, I'm doing a free live workshop, The Holiday Capacity Audit, next Tuesday, October 20. We'll look at the holiday commitments that cost you the most energy, the trips included, and you'll leave with your first decision made before November or even December gets here. It's free, and you do need to register. The replay comes to your inbox after the session.

Save your spot for the free workshop

This post is for education, not medical advice for your specific situation.

See more articles: