Myths About Sjogren’s Disease, the Harm They Cause, and What You Can Do About It

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April is Sjogren’s Awareness Month.

Awareness of Sjogren’s is important because myths and misconceptions about the disease perpetuated in research and medicine make it difficult to get care and support. 

Myths about Sjogren’s are published on major medical websites, such as that of the Cleveland Clinic, Mayo Clinic, and Harvard Health.  

For example, the Sjogren’s pages on all 3 websites are titled “Sjogren’s Syndrome” and refer to Sjogren’s as a syndrome throughout, even though last year the name was officially changed to “Sjogren’s Disease”.  The international Sjogren’s community arrived at this decision after almost 10 years of advocacy and rigorous deliberation by clinicians and patients from nearly 30 countries, initiated and led by the Sjogren’s Foundation.  According to the Sjogren’s Foundation, Sjogren’s Syndrome became Sjogren’s Disease, “to ensure that the words we use to describe Sjögren’s communicate that it is serious and systemic”.  

The International Task Force on Nomenclature of Sjogren’s Disease notified the research and medical communities via a publication in the highly prestigious rheumatology journal, Nature Reviews Rheumatology, on June 10, 2025.

Myths about Sjogren’s disease published on major medical websites erode the trust between Sjogren’s patients and their loved ones, causing stress and loneliness.

Stress and loneliness are profoundly inflammatory and add to the already high burden and expense of Sjogren’s disease.  

According to the Sjogren’s Foundation, “Living a healthy lifestyle consisting of an anti-inflammatory diet, adequate sleep, exercise, and minimal stress are an important part of living well with a chronic disease.”  Publishing accurate information about Sjogren’s disease in research and medicine would go a long way towards reducing stress levels in Sjogren’s patients.  But that appears to be easier said than done, given how hard it is to get major medical institutions, like the Cleveland Clinic, to accurately name the disease on their websites. 

Cleveland Clinic’s tag line is, “We're here when you need us — for every care in the world.”  Every care, that is, except Sjogren’s disease, which is inaccurately named and described on their website.  

The Cleveland Clinic page on “Sjogren’s Syndrome” was medically reviewed and updated as recently as December 23, 2025, six months after the official publication of the name change.  On the page, Cleveland Clinic mischaracterizes Sjogren’s disease by describing it as, “Sjögren’s syndrome happens when your immune system damages the glands that produce and control moisture in your body.”  What’s wrong with that, you ask?

Sjogren’s disease is never limited to dryness, i.e., damage to the moisture-producing glands in the body. 

Sjogren’s can affect any part of the body including, but not limited to, the nervous, gastrointestinal, cardiovascular, and respiratory systems, kidneys, liver, skin, and eyes.  In fact, Sjogren’s is the second leading cause of dysautonomia and over 70% of Sjogren's patients have some form of neuropathy. 

Sjogren’s disease is an autoimmune rheumatic disease and a connective tissue disease, just like lupus, rheumatoid arthritis, and systemic sclerosis. 

Living with Sjogren’s disease increases your risk of infection, cancer, and cardiovascular disease.  

Infections are the leading cause of death in Sjogren’s disease. 

Yes, Sjogren’s disease can kill you.

Consequently, the Cleveland Clinic’s healthcare communication on Sjogren’s does a lot of harm. 

Their Editorial Policy page states, “As one of the world’s top hospitals, Cleveland Clinic wants to empower you with the trustworthy information you need to understand your body and make decisions about your health…At Cleveland Clinic, we feel that healthcare communication should do no harm.”  And yet they continue to publish inaccurate information about Sjogren’s disease that disempowers and gaslights Sjogren’s patients, prevents them from understanding what’s happening in their bodies, and, most importantly, prevents them from getting the care and support they need and deserve.  The end result is that Sjogren’s patients experience a much lower quality of life than they would have had they had access to accurate information and care in a timely manner.

Tired of supporting and educating distraught, stressed out, gaslit Sjogren’s patients, I asked the Sjogren’s Foundation when they were going to address what appears to be an easily preventable issue. 

The Sjogren’s Foundation replied, “This is not something we are ignoring. We have been actively engaging both medical websites and their editorial teams to address accuracy and advocate for change. These editorial teams are making decisions based on search behavior data, which still heavily favors historical terminology. While we do not control their platforms, we are pushing persistently.”

As a fellow Sjogren’s patient pointed out, it seems like, “Sjogren’s Disease, formerly known as Sjogren’s Syndrome” would address the editorial teams’ concerns.  Instead, the Cleveland Clinic editorial team addresses the name change with a single dismissive sentence that implies that the name change is unofficial and controversial, “Some healthcare providers call it Sjögren’s disease.”   

Anyone who knowingly continues to call Sjogren’s a syndrome is demonstrating their lack of knowledge and understanding of the disease, their lack of respect and care for the Sjogren’s community, and their refusal to commit to doing no harm.  

In 2023, to address myths about Sjogren’s disease, Dr. Sarah Schafer and I collaborated on and published the "Myths About Sjogren’s" and "Myths About Diagnosis" pages on www.sjogrensadvocate.com.  

Each page lists roughly 10 myths and presents practical strategies and tools to counter each myth and to advocate for diagnosis and care.  Sjogren's Advocate published these pages long before major organizations acknowledged the harm caused by an outdated understanding of the disease.  

Sjogren’s disease is not rare, it’s just rarely diagnosed. 

It’s as common as rheumatoid arthritis and 3 times as common as lupus.  In the US, Sjogren’s disease affects roughly 4 million people, and that’s not counting all the people who are undiagnosed and suffering because myths and misconceptions about Sjogren’s prevent them from getting diagnosed and receiving the care and treatment they need.  Care and treat are good words we rarely get to hear.

Sjogren’s disease can affect anyone at any age, not just women between the ages of 45 and 55.  

Sjogren’s disease affects women more than men.  But men can and do get Sjogren’s disease.  If you’re a man with Sjogren’s, let alone a young man or boy, it’s even harder to get diagnosed and get care. 

Most Sjogren’s patients I know believe they developed Sjogren’s long before they were diagnosed, in their childhood or early adulthood.  They faced decades of denial, dismissal, psychologizing, and gaslighting before the damage done by the systemic manifestations of Sjogren’s became visible, measurable, and impossible to ignore. 

This Sjogren’s Awareness Month, here are two ways to raise awareness:

1. Email the Cleveland Clinic editorial board at editorial@ccf.org and ask them to publish accurate, trustworthy information about Sjogren’s, including calling it “Sjogren’s Disease”. 

2. Support the Sjogren’s Foundation and the important work they do by donating to my Walk For Sjogren’s and/or joining my Walk For Sjogren’s team, “Bexi’s Supporters of Research and Advocacy”.  

For questions, comments, or feedback, please message me at bexiphd.com or leave a comment below.

A version of this blog post is published in my local newspaper, The Davis Enterprise.

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