WHAT IS SJOGREN'S (SHOW-GRINS)?
Sjogren’s (SHOW-grins) is a COMMON and SERIOUS autoimmune disease
that is more than just SICCA (dryness);
Sjogren's is always SYSTEMIC.
Most of the problems caused by Sjogren's have nothing to do with dryness.​
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MYTHS ABOUT SJOGREN'S remain widespread.
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Sjogren's is not a syndrome,
is not rare,
is not benign,
is not a nuisance dryness disease, and
is not secondary to any other autoimmune or immune-mediated disease.
Sjogren's is often overlooked.​ Sjogren’s Advocate helps people living with Sjogren's achieve more timely diagnosis and better medical care. Learn more ABOUT SELF-ADVOCACY.
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Key Concepts
What Sjogren's Disease IS
Sjogren's is a SYSTEMIC autoimmune disease that can impact almost every part of the body.
Sjogren's is a systemic autoimmune disease. It is the result of a malfunctioning immune system attacking various organs and tissues throughout the body.
Sicca, caused by an attack of the moisture-producing glands, is just one part of a complex disease. It is important but overemphasized, leaving many people with Sjogren's undiagnosed because it is not always obvious and not always present.
Note: For simplicity, I use the terms "sicca" and "dryness" interchangeably, even though sicca is more than just dryness. SICCA/DRYNESS for more information.
Most problems caused by Sjogren's are systemic and have nothing to do with dryness or the moisture-producing glands.
Organs, nerves, skin, and blood vessels are not damaged because they "dry up." Kidney disease and interstitial lung disease are not caused by damage to moisture-secreting glands. Symptoms like muscle and joint pain, fatigue, and cognitive dysfunction ("brain fog") are not caused by dryness, but by systemic inflammation and a dysregulated immune system.
Sjogren’s can damage the lungs, nerves, joints, gastrointestinal tract, kidneys, skin, blood vessels, and more. Sjogren's leads to lymphoma in 5-10% of patients (249). In severe cases, systemic manifestations such as lung disease can be fatal. Fatigue, cognitive dysfunction ("brain fog"), and pain are core systemic features of the disease.
Sicca is not the most important feature of the disease; it is just the most well-known.
Nearly every Sjogren's patient who is carefully evaluated will be found to have one or more systemic (non-dryness) manifestations (38, 266). Systemic manifestations are often missed because few doctors have been trained about all the ways Sjogren's can impact the body. No two Sjogren's patients are exactly the same. The only way to know how Sjogren's is impacting an individual is by monitoring them for a wide range of systemic manifestations, not just sicca. ​​
The next time someone asks, "What is Sjogren's?", say,
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"Sjogren's is a common and serious autoimmune disease
that can impact every part of the body.
It's never just dryness."
Myths about Sjogren's remain widespread,
leading to under-diagnosis and inadequate care.
Sjogren's is SERIOUS.
People with Sjogren's live with a high burden of disease. Sjogren’s is associated with excess mortality, both from systemic involvement and from comorbidities such as cardiovascular disease. While most people with Sjogren's do not die directly from their disease, quality of life and function are worse, on average, than they are for people with rheumatoid arthritis (RA) or systemic lupus erythematosus (SLE) (99).
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Extreme fatigue, along with pain and cognitive dysfunction ("brain fog"), contribute to impaired quality of life and function. These symptoms, rather than dryness, are the primary reasons patients struggle with daily activities, socializing, and maintaining employment (197, 240, 243 ).
Sjogren's is COMMON and often overlooked.
Sjogren’s impacts an estimated 4 million people in the US, with women representing 9 out of 10 cases. Sjogren's is about as common as rheumatoid arthritis (RA), and three times as common as systemic lupus erythematosus (SLE), two closely related diseases. Despite this, Sjogren's receives significantly less research and clinical attention than RA and SLE.
Most people with Sjogren's remain undiagnosed because of a lack of clinician training and awareness. People usually seek diagnosis for systemic symptoms, which often impact multiple areas of the body. Due to a lack of familiarity with typical Sjogren's presentations, clinicians often misattribute symptoms to fibromyalgia, anxiety, irritable bowel syndrome, or functional neurological disorder. It is common for people to live with these labels for years or even decades before Sjogren's is finally recognized. If you suspect you have Sjogren's disease and are struggling to get diagnosed 12 Reasons People With Sjogren's Don't Get Diagnosed helps you understand why.
Timely diagnosis and management can reduce disease progression, improve quality of life, and detect systemic manifestations earlier, when they are more likely to respond to treatment.
See MYTHS ABOUT DIAGNOSIS for self-advocacy tools. ​​​
Sjogren's is COMPLEX and unpredictable.
Sjogren's presents differently in each person and does not progress through an orderly set of stages. Because of this, comprehensive Sjogren's care requires clinicians to monitor a wide range of SYSTEMIC manifestations, COMORBIDITIES, and SICCA on a regular basis to assess the patient's disease burden over time.
Sjogren’s is MISCHARACTERIZED and downplayed.
Sjogren's care varies widely. There is no standard of care and there are no formal guidelines for monitoring Sjogren's disease in routine practice.
Despite undeniable evidence that Sjogren's is systemic disease, never "just sicca", it is frequently misrepresented by medical educators and mainstream medical websites as a mild dryness disease, often with systemic involvement incorrectly reported as occurring in only 40% of cases. This misconception leads rheumatologists to underestimate the profound systemic impact of Sjogren's, including on patients' quality of life. Regular monitoring for systemic manifestations is crucial for early intervention, which can help prevent or reduce disease progression and organ damage. Learn more about why misconceptions matter and how the medical field can come to a better understanding of Sjogren's.​​​
When clinicians diagnose their patients with a sicca-limited version of Sjogren's, which does not exist,
systemic manifestations are often overlooked and left to progress unchecked, sometimes causing irreversible damage.
What Sjogren's Disease Looks Like
Sjogren's disease looks different from person to person, which is partly what makes it challenging to diagnose.
These are some of the most common early signs and symptoms of Sjogren's disease:
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Severe fatigue, often associated with widespread pain
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Sleep disorders, lack of refreshing sleep
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Cognitive dysfunction (brain fog), difficulty concentrating, functioning at work
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Chronic cough, often dry
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Recurrent / chronic sinusitis
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GERD, gastrointestinal (GI) pain, chronic nausea, “irritable bowel”, constipation, SIBO
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Recurrent oral / vaginal candidiasis
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Vaginal dryness / painful intercourse
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Interstitial cystitis / bladder pain syndrome
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Constitutional symptoms: fever, enlarged lymph nodes, unintentional weight loss
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Dry, irritated eyes, blurred vision, burning sensation
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Dry mouth, severe or unexplained dental caries
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Neuropathies: painful sensory neuropathies and others
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Autonomic disorders (dysautonomia) such as POTS (often undiagnosed)
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Raynaud’s phenomenon
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"Fibromyalgia"
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If you suspect you may Sjogren's disease, please read the DIAGNOSIS section, particularly PCP STEPS TO DIAGNOSIS, which outlines the approach your primary care physician (PCP) should take.
What Sjogren's Disease IS NOT
Sjogren's Is Not A Syndrome.
Sjogren’s disease ("Sjogren’s" for short) is a well-characterized SYSTEMIC disease
and should not be called “Sjogren’s syndrome.” Use the flyer and self-advocacy tips in this blog post to notify clinicians to the name change.
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Sjogren's Is Never Limited To Sicca (Dryness).
Sjogren's should never be called sicca syndrome or a sicca-limited disease.
Sicca is important, but not present in every patient, especially early on. ​
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Sjogren's Is Not a Benign Disease Or A Nuisance Dryness Disease.
Sjogren’s is SERIOUS and occasionally life-threatening.
All Sjogren’s patients should be monitored for systemic complications regardless of symptoms or antibody status.
​Sjogren's Is Not Secondary To Another Autoimmune Rheumatic Disease (AIRD).
SJOGREN'S IS SJOGREN'S, whether or not it is associated with another AIRD. ​Use the flyer and self-advocacy tips in this blog post to notify clinicians that Sjogren's is no longer secondary to another AIRD.
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To learn how to counter these and other misconceptions (myths), please visit
USER GUIDE: SJOGREN'S IS MORE THAN "JUST SICCA",
Sjogren’s Advocate helps you counter myths
and advocate for the care you need and deserve.
​Self-Advocacy Resources
HOW TO USE SJOGREN'S ADVOCATE explains how to find information on the website and blog. Remember to type a few key words into the search bar to look for a topic.
The SELF-ADVOCACY section of Sjogren's Advocate discusses the practical aspects of Sjogren's care, providing tools and strategies for working with clinicians.
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The RESOURCES section connects you to a wide variety of additional resources for support and self-advocacy. ​​​​​
Sjogren's Advocate is just one aspect of my broader advocacy for the Sjogren's community.
Visit the MISSION page to learn more about my many contributions
aimed at improving the lives of people with Sjogren's.​
Updated 09-13-2025