Between Appointments: What Two Sjögren's Doctors Want You to Know
For Sjögren's Awareness Month, we did something a little different. Instead of writing from the patient's perspective, we asked two of the most thoughtful practitioners in the Sjögren's world, doctors Nancy Carteron and Kara Wada three questions about what they wish every patient knew.
Question 1: What do you wish every newly diagnosed Sjögren's patient understood about their condition that most don't hear at their first appointment?
The first appointment rarely tells the whole story, and sometimes it tells the wrong one. Patients with Sjögren's frequently hear things like…
"Your labs are normal."
“Sjögren's is mostly a dryness problem."
"There's nothing much to treat."
"You don't really need to see a specialist."
Both doctors want to address this directly.
Dr. Carteron: Sjögren's disease can have a very diverse set of manifestations, and rarely does an individual have or eventually get all the known associations. The most important thing is to understand what underlies an individual's symptom group. This allows identification of specific risks to then discuss and manage.
In my experience, the first 6-12 months after appropriate diagnosis are the most challenging (anxiety, fear, many questions). Then the individual phenotype becomes clearer, and tools have been found to help. Worry doesn’t shorten this process and an individual can eventually understand their symptoms, find potential triggers, and strategies that work. There are a lot of resources available to help the educational process.
Dr. Wada: I wish every newly diagnosed patient understood that Sjögren's is not "just dryness." Sjögren's disease is a systemic, immune-mediated condition that can affect energy, cognition, pain pathways, and overall quality of life in ways that aren't always visible on standard labs.
Many patients are told their labs are "normal," and that can unintentionally shut down curiosity. But normal labs don't mean nothing is happening — they often mean we haven't yet asked the right questions or looked in the right places.
I also wish patients knew that their symptoms are not random. There is usually a pattern, a "perfect storm" of immune dysregulation, nervous system signaling, environmental triggers, and metabolic factors. When we start connecting those dots, things begin to make more sense — and importantly, we can start identifying meaningful ways to support the body.
And finally: your experience is real, even if it hasn't been fully explained yet. You deserve care that is curious, comprehensive, and collaborative.
Question 2: What do you wish patients felt more empowered to say or ask during a medical appointment?
Both doctors return to the same theme here: The appointment is a conversation, and the patient's voice belongs in it.
Dr. Carteron: Trust yourself to share your story with a healthcare provider. If you don't feel heard, consider speaking up and speaking out stronger, or try another professional. Know that many providers are not yet particularly experienced in Sjögren's disease, but they may be open to learning about resources, such as the Sjögren's Foundation.
Sometimes, writing your own story from the time you were "well" helps organize the picture for a clinician. Keep simplifying what is sometimes a complex and long history into an outline that can be more easily processed by a clinician.
Dr. Wada: I wish more patients felt empowered to say: "I don't feel heard" or "Something still isn't adding up for me." Medicine often moves quickly, and many patients with Sjögren's have complex, multi-system symptoms that don't fit neatly into a 10-15 minute visit. It's okay to slow things down and advocate for clarity. I encourage patients to ask:
"How does this diagnosis explain all of my symptoms, not just some of them?"
"What are we not looking at yet?"
"If this plan doesn't help, what's our next step?"
And just as important: "Can we prioritize what matters most to me right now?"
Empowerment doesn't mean having all the answers; it means feeling safe enough to stay in the conversation. The most effective care happens when patients and clinicians work as partners, not when patients feel like passive recipients of decisions.
Question 3: What role do peer connection and community play in managing Sjögren's, and what would you say to a patient who feels too overwhelmed to seek them out?
This question generated perhaps the most personal answers of all — especially from Dr. Wada, who speaks here not only as a clinician but as someone who has navigated Sjögren's disease herself.
Dr. Carteron: Community provides a shared experience – an opportunity to receive help, education, and local resources – but it also becomes an opportunity for the individual to help others. It may become part of the healing process for some.
In my experience, peer connection does not work for all persons. People collect tools in different ways; but for many, once they take that step, it is a valuable resource in their journey.
Dr. Wada: Living with Sjögren's can feel incredibly isolating, especially because many symptoms are invisible or misunderstood. Peer connection helps close that gap. It offers something medicine alone often can't: the sense of being seen, understood, and not alone in the day-to-day reality of living in your body. Community can also be a powerful source of practical wisdom including how to navigate fatigue, advocate at work, manage flares, or simply get through a hard day.
At the same time, it's important to be thoughtful about the spaces you engage in. Not all communities feel supportive. Some can unintentionally become centered around comparison or what I often hear patients describe as "the suffering Olympics" – where the most extreme or distressing experiences rise to the top. Research shows that while support groups can reduce isolation, they can also sometimes increase anxiety when people are exposed primarily to worst-case scenarios or negative experiences.
So I encourage patients to approach community with the same intention they would their nutrition or environment. Pay attention to how a space makes you feel. Does it leave you more resourced, or more overwhelmed? If you're feeling too overwhelmed to engage, start small. You don't have to participate actively. You can simply observe, read, or follow voices that feel steady, balanced, and grounded in both reality and possibility.
Even a small shift that leads to feeling 1% more seen or 1% less alone matters. Over time, those small moments can help transform isolation into something more supportive and sustainable.
We are grateful to Dr. Carteron and Dr. Wada for their time, their expertise, and their genuine investment in the Sjögren's community.
In addition to the Sjögren's Foundation mentioned above, we also recommend the Sjögren's Advocate for additional resources. Dr. Sarah Schafer runs the website and is also a physician living with Sjögren's. Her site is one of the most comprehensive patient-facing resources available. If you want to go deeper on what Sjögren's actually is, how it's misunderstood, and what patients deserve to know, her work is an excellent place to start.
If you or someone you love is living with Sjögren's disease, we invite you to join the conversation at Smart Patients — a place built on exactly the kind of peer connection described above.