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SELF-ADVOCACY
This section discusses practical aspects of Sjogren's care, providing tools and strategies for working with clinicians.
Sjogren's is a neglected disease. Even though Sjogren's is common and serious, people with Sjogren's often need to learn a lot about the disease in order to advocate for the care that they need. Sjogren's Advocate provides tools and strategies for people with Sjogren's and primary care practitioners (PCPs) to promote comprehensive care.
About Self-Advocacy
This page explains how to advocate for the diagnosis and management of the systemic (non-sicca) manifestations of Sjogren’s.
This page also explains and describes:
- why so many rheumatologists do not pay enough attention to the systemic (non-dryness) aspects of Sjogren’s disease,
- how to work with clinicians, based on their particular approach to Sjogren’s disease, and
- the 3 P’s essential to self-advocacy: Prioritize, Prepare, and Practice.
Know Your Rheumatologist
Sjogren's rheumatology practice varies a lot. Not every rheumatologist is up to date on Sjogren's, especially when it comes to the systemic aspects of the disease. Rheumatologists should routinely monitor all Sjogren's patients for systemic manifestations, regardless of symptoms or serostatus (SSA-positive / SSA-negative). Sjogren's is never just a dryness disease.
The first step toward working effectively with your rheumatologist is to learn how they approach Sjogren's care. If they view Sjogren's as a nuisance sicca (dryness) disease, they are unlikely to provide comprehensive Sjogren's management. This page offers tips for how to diplomatically talk with your rheumatologist about the range of care that they offer.
Handouts For Clinicians (How To Share Information With Your Clinician)
This page gives you step-by-step instructions for how to find and share accurate, up-to-date information from credible sources, with your clinicians.
It also walks you through how to use the 3P’s of self-advocacy (Prioritize, Prepare, Practice) to advocate for the appropriate medical care of Sjogren’s.
Lastly, there’s an example of how you can put these steps into action to find information to counter clinicians who downplay or psychologize fatigue caused by Sjogren’s. While other examples would be much simpler, using this complex topic shows you how to find self-advocacy information when there is no simple article or handout readily available.
Printable Handouts
USER GUIDE FOR HANDOUT: SJOGREN'S IS MORE THAN "JUST SICCA" covers the essential facts that every clinician should know about the disease. The printable handout on this page shows why ongoing monitoring is needed for every patient, regardless of symptoms or antibody status.
Note: This self-advocacy tool makes a "slam-dunk" case showing that Sjogren's is a serious systemic disease. Please read the user guide carefully to understand how to use the handout effectively.
PRINTABLE HANDOUTS FOR CLINICIANS provides printable versions of the Clinical Practice Guidelines for Sjogren’s and other appropriate articles on Sjogren’s that you can share and discuss with your rheumatologist and other clinicians.
Share copies of the Sjogren's Elevator Pitch Handout with family, friends, and non-rheumatology clinicians who need to know what Sjogren's is, how it affects you, and why you may need their understanding and/or help.
Myths About Sjogren's
This page lists common myths about Sjogren’s countered with the current understanding of the topic using the best scientific evidence available. Self-advocacy tools to counter each myth are provided.
Myths About Diagnosis
This page lists common myths about Sjogren’s diagnosis. Each myth is countered with the current understanding of the topic using the best scientific evidence available. Self-advocacy tools to counter each myth are provided.
Updated 06-15-2024