FREQUENTLY ASKED QUESTIONS (FAQ)
Key Concepts
This page helps you quickly find the information and self-advocacy tools you need.
​​
Click on a section below to scroll to FAQ within that section.
​​
Notes
When you click on a hyperlink it will open in a new browser window.
Hyperlinks in "ALL CAPS" denote pages on Sjogren's Advocate.
Hyperlinks in "Sentence Case" denote blog posts on Sjogren's Advocate.
THE REALITY OF SJOGREN'S DISEASE​​
1. My doctor says Sjogren’s is just a sicca syndrome and/or just dry eyes and dry mouth. Is that true?
No. Sjogren’s disease is a serious systemic disease that can be disabling and debilitating. It can cause permanent organ and nerve damage and can even be fatal if problems are not identified early.
​
Read:
2. If Sjogren’s is a serious disease, why don’t doctors take it seriously?
Doctors don't take Sjogren's disease seriously because of myths and misconceptions about the disease and how it is diagnosed remain widespread.
​
Read:
HOW TO FIND HELP​
1. How can I find information on Sjogren’s Advocate?
Read:
-
GLOSSARY (learn what medical terms mean in the context of Sjogren’s)
2. How do I find referrals to doctors in my area, feedback about my individual circumstances, and emotional support?
Patient support groups are a great place to get individual feedback, tips, emotional support, and local referrals. Beware, patient support groups may contain well-meaning but misinformed individuals. I recommend joining the Sjogren’s Smart Patients online group, which has excellent monitors and support staff.
Read:
​
3. I’m overwhelmed. Where can I find different and/or more help?
I partnered with board-certified patient advocate, Kristina Kelly, to provide you with a video course called
Streamlining Sjogren’s that provides you with in-depth help.
DIAGNOSIS
1. How can I tell if I have Sjogren’s?
Sjogren’s signs and symptoms vary a lot between patients. Most doctors have not been trained to recognize even typical presentations of Sjogren’s disease and often misdiagnose Sjogren’s as fibromyalgia, menopause, irritable bowel syndrome, functional neurological disorder, or anxiety.
Read:
2. Why is it important to diagnose Sjogren’s?
Sjogren’s is a serious systemic disease that can affect the entire body. Timely diagnosis and intervention are crucial, offering the best chance to slow its progression and improve long-term outcomes, including quality of life.
Read:
3. How do I get diagnosed with Sjogren’s? ​
Read:
​
4. I’m pretty sure I have Sjogren’s, but my doctor says I don’t. Am I imagining my symptoms?
No, you are not imagining symptoms. Sjogren’s symptoms often appear years before diagnostic tests turn positive. Trust that your experience is real and continue to advocate for yourself even if your doctors downplay your symptoms.
​
Read:
Updated 10-20-2025