Beyond Dryness: Why We're Still Getting Sjogren's Wrong

I genuinely appreciate the growing number of articles aiming to raise awareness for Sjogren's Disease. Any platform that helps patients feel seen, or helps clinicians pause and reconsider long-held assumptions, is a welcome and important step forward. Framing the conversation around “what we get wrong” is a powerful starting point.

That said, I think this is also where we need to be more precise and, frankly, more courageous in our discussion.

The Dryness-First Fallacy: Starting the Story in the Wrong Place

Even when an article aims to challenge misconceptions, Sjogren’s is still too often framed primarily as a disease of dryness. Yes—sicca symptoms are real, burdensome, and clinically relevant. But here's a critical truth that gets lost: most patients are not walking into their first medical appointment because their eyes or mouth feel dry.

They come because they are exhausted in a way sleep doesn’t fix. Because they hurt all over. Because they're experiencing neuropathic symptoms, brain fog, dizziness, burning, tingling, weakness, or a constellation of unexplained systemic complaints that don’t neatly fit into a single box.

If we continue to lead the conversation with dryness, we unintentionally reinforce the very diagnostic delays we are trying to solve.

As clinicians, we need to reverse the sequence. When a patient presents with chronic fatigue, widespread pain, or perplexing neurologic symptoms, Sjogren’s Disease needs to move higher on our differential diagnosis list. Those symptoms should prompt us to ask about dryness—not wait for patients to volunteer it, especially when many have normalized their dryness over years or assume it’s unrelated to their primary complaint.

The 40% Problem: When "Normal" Labs Aren't Normal

There’s another hard truth we need to fully absorb: 30–40% of patients with Sjogren’s are seronegative.

Let that sink in. Three to four out of every ten people with this disease will have “normal” blood work for the classic Sjogren's antibodies (Anti-SSA/Ro and Anti-SSB/La). If that statistic truly sank into our collective clinical consciousness, it would fundamentally change how confidently we rule Sjogren’s out—and how often we miss it. Too many patients have been reassured prematurely, their diagnosis delayed for years, or they've been redirected to other specialists because their labs didn’t cooperate with their clinical picture.

The Rarity Myth: A Disease Hiding in Plain Sight

Zooming out even further, this is not a rare disease. Roughly 1 in 100 people are affected. What’s rare is how often it’s considered, how early it’s recognized, and how consistently it’s diagnosed.

We are all collectively living with the consequences of that gap. It’s why patients reach out to me from across the country—and across the globe—trying to piece together symptoms that were evaluated in isolation rather than as part of a unifying diagnosis.

Beyond Awareness: A Call for a New Narrative

So yes, I’m grateful for the growing conversation around Sjogren’s Disease. It matters. But awareness alone isn’t enough if we keep centering the story in ways that don’t match how patients actually experience the illness—or how it first shows up in real life.

If we want a fighting chance at shortening the diagnostic odyssey for millions of people, we need to listen differently, think differently, and let go of the idea that dryness has to lead the way.

What was the first symptom that made you realize something was wrong? Was it dryness, or was it the fatigue, pain, or something else entirely? Share your story in the comments below—your experience is so important.