Why Myths and Misconceptions About Sjogren’s Matter.
Patients rightfully expect their doctors to be knowledgeable about a prevalent, serious, multisystem disease like Sjogren's. Despite overwhelming evidence that Sjogren’s is always systemic (38, 266, 267), it continues to be mischaracterized as a dryness (sicca) disease with only occasional systemic involvement. This misconception is so deeply ingrained that many clinicians do not think to question it.
Clinicians who hold this inaccurate view often miss a Sjogren’s diagnosis because they are not familiar with systemic presentations. Even after Sjogren’s is diagnosed, symptoms caused by systemic manifestations are often downplayed, psychologized, or misattributed to other conditions. Sicca is important, but just one of many features of Sjogren’s disease. Not everyone with Sjogren's, especially those with neurological presentations, experiences sicca (202).
“Myths” and “misconceptions” have slightly different meanings, but I use them interchangeably on Sjogren’s Advocate to describe inaccurate and harmful medical information.
Why is Sjogren’s so Misunderstood? Inadequate medical education is a primary contributor to the misunderstanding and neglect of Sjogren's. The limited Sjogren’s education available often reinforces misconceptions and fails to accurately portray the extent of systemic disease.
I have attended every online Sjogren's continuing medical education (CME) program offered since their inception in 2019. Unfortunately, these programs have provided inconsistent, and sometimes inaccurate, information. While a few lecturers accurately conveyed Sjogren's as a systemic disease, others have echoed the American College of Rheumatology’s (ACR’s) incorrect portrayal of Sjogren’s as a sicca disease with 40% experiencing systemic involvement.
Inconsistent and inaccurate messages from rheumatology leaders and organizations contribute to the perpetuation of Sjogren's myths, which hinder diagnosis and proper care.
What Does Good Sjogren’s Care Look Like?
Every person with Sjogren's, regardless of antibody status or symptoms, should undergo regular monitoring for a wide range of systemic manifestations. Care should never be limited to addressing sicca symptoms alone.
Early diagnosis and treatment of systemic manifestations enables prompt treatment, which can reduce disease progression, improve quality of life, and lead to better outcomes.
While there are rheumatologists, like my own, who understand this and provide comprehensive Sjogren's care beyond sicca, unfortunately, this is not the norm.
Until we achieve better training and clear standards of care, patients often need to advocate for diagnosis and comprehensive care. Sjogren’s Advocate helps patients do this by providing self-advocacy information and tools, such as those found on the MYTHS ABOUT SJOGREN'S and MYTHS ABOUT DIAGNOSIS pages. Self-advocacy for diagnosis and medical care for Sjogren’s should not be necessary. People with Sjogren’s already live with a high burden of disease; they should not need to carry this burden too.
A Call for Action: Updating Sjogren’s Education and Care
I was offered a unique opportunity to raise awareness about misconceptions when an editor at the Healio Rheumatology newsletter invited me to contribute an article on this topic after discovering my work on Sjogren's Advocate. It is gratifying that my many years dedicated to raising awareness about the gap between Sjogren’s knowledge and clinical practice is finally reaching the professionals who have the power to implement changes on a system-wide scale.
My article calls for Sjogren’s experts and rheumatology leaders to provide consistent, accurate Sjogren’s medical education. It is not enough to simply provide more Sjogren’s education programs. To be effective, future Sjogren's education programs must prioritize dispelling myths and misconceptions and highlighting the full spectrum of systemic manifestations. Sjogren's experts and the ACR must work together to align their understanding of the disease.
Until clinicians are given clear, consistent guidance, Sjogren's will continue to be neglected and downplayed.
I encourage you to share 'My own diagnosis was delayed’: Sjögren’s myths overshadow multi-system manifestations with your clinicians to help raise awareness about the importance of accurate diagnosis and comprehensive care for Sjogren's.
