Living With Lupus and Sjögren's: The Things You Don't See

It started on the happiest flight of my life.

December 2018. My husband and I were on our way to Thailand for our honeymoon. Somewhere over the ocean, my legs began to swell — not a little, but to twice their normal size, red as cherries, so tight and inflamed I genuinely thought my calves were going to burst. I had no idea what was happening to me. I just knew something was very, very wrong.

It kept happening. Daily. I couldn't figure out the trigger, only that alcohol seemed to make it worse. And then it kept happening for years — because I wasn't diagnosed until 2021. Three years of not knowing what was attacking my own body.

What I eventually learned: I have lupus and Sjögren's syndrome. Two autoimmune conditions where the immune system — the thing meant to protect me — gets confused and turns on me instead. They're mostly invisible. And that invisibility is its own kind of weight.

I'm writing this not for sympathy, but because somewhere out there is a woman who feels exactly like this and thinks she's the only one. You're not. Let me show you what it actually looks like — and the things that genuinely help.

Everything I had to give up

Getting diagnosed didn't fix things — it just gave me a map of what I'd have to change. And the list was almost everything I loved.

Spicy food. Garlic. Sitting in the sun. Sunbathing, which I adored. Alcohol — not "cut back," but never again. And the hardest one of all: stress. I had to remove stress from my life, except stress doesn't ask permission. So much of what sets me off isn't within my control, and learning to live with that gap — between what I'm "supposed to" avoid and what life actually throws at me — has been one of the hardest parts.

I now work from my bed. Not because I'm not capable, but because I can't sit or stand for long before the inflammation starts. That's a sentence that took me a long time to be able to say without shame.

What a flare actually does

When I'm under stress, the smallest thing — even a sudden noise — can set off a flare. And once it starts, I'm not "a bit sore." I get itchy hives across my whole body, my muscles seize, and I can't walk without limping for three to five days at a time. My body essentially shuts down a part of itself, and I have to wait it out.

Then there's the fatigue and the brain fog — the part that's hardest to explain to people who haven't lived it. On bad days, I can't handle even small decisions without an incredible amount of effort. Choosing what to eat, answering a simple question — it can feel like wading through wet concrete.

The part nobody understands

Here's the thing that makes invisible illness so isolating: I am a very capable person. On my good days, I can do a lot. I show up, I coach, I create, I mother, I get things done.

And that's exactly what makes the bad days so hard for people to understand. When someone has seen you fully capable, they struggle to believe the version of you who can barely make a decision is the same person. The contrast doesn't read as "she's ill." It reads as "she's being dramatic" or "she's just tired." So on top of the pain, you carry the quiet exhaustion of not being believed.

For a long time I thought managing all of this invisibly was strength. I've since learned that real strength is letting people in — and refusing to apologize for a body I didn't choose.

The things that actually help

These aren't cures. They're the tools that have given me my life back, one small choice at a time.

My medication. Hydroxychloroquine helps — not always, and not completely, but it's part of my foundation. (Everyone's treatment is different; this is just what's part of mine.)

Pacing — treating energy like a budget. This changed everything. I stopped trying to do everything on my good days, because overdoing it on a good day is exactly what buys me a flare. Now I spread effort across the week, plan my hardest tasks for my highest-energy windows, and protect rest like an appointment I can't move.

Removing what I can control — and making peace with what I can't. No alcohol, no spicy food or garlic, careful sun protection, a workspace set up so I'm not sitting or standing too long. I control the controllables ruthlessly, so I have more margin for the triggers I can't predict.

Gentle movement, not punishment. I used to think exercise had to be intense to count. With these conditions, that thinking will break you. Now I move with my body — mobility work, walking on good days, strength training I can actually recover from. The goal isn't to push through pain; it's to keep my joints and muscles as happy as possible. Consistency over intensity, always.

Protecting my nervous system. Because stress and even sudden noise can trigger a flare, calm isn't a luxury for me — it's medicine. Lowering the volume of my life, where I can, directly lowers my flares.

Rest without the guilt. Rest isn't a reward I earn after being productive. It's part of my treatment. I've had to unlearn the idea that resting means I'm lazy or falling behind.

Lowering the bar on flare days. When my body says stop, the cost of ignoring it is always higher than the cost of listening. "Done over perfect" isn't just a motto for me — it's survival.

What this has taught me about strength

Living with chronic illness rewired how I think about health — and honestly, it's the heart of how I coach now. I don't believe in grinding yourself into the ground. I believe in building a body and a life that can actually sustain you. Strong body, soft heart, powerful life — not despite the soft parts, but because of them.

If you're living with lupus, Sjögren's, or any invisible illness: you are not weak, you are not exaggerating, and you are not behind. You can be deeply capable and have days where getting through is the whole win. Both are true. Both are allowed.

Be gentle with yourself. Pace yourself. And know you're not doing this alone.

With you,* *Lili

---

This post shares my personal experience and isn't medical advice. Lupus and Sjögren's affect everyone differently — please work with your own healthcare team to find what's right for you.