ABOUT SELF-ADVOCACY
Key Concepts
This page explains how to advocate for the diagnosis and management of the systemic (non-sicca) manifestations of Sjogren’s.
(See the SELF-ADVOCACY FOR DIAGNOSIS page for information about getting diagnosed with Sjogren’s disease.)
Why You Need To Advocate For Yourself
Sjogren’s is serious and systemic.
Left unmanaged and untreated, Sjogren’s can progress unchecked, causing organ system damage and debilitating symptoms.
Most clinicians lack the critical education and guidance they need to provide you with comprehensive care. Medical education and updates on Sjogren's are rarely offered to clinicians. Moreover, there are no monitoring guidelines for routine Sjogren’s care.
Learn more about Coping, Communicating, and Gaslighting.
Sjogren's Advocate Assists You In Advocating For Timely Diagnosis And Comprehensive Care.
Note: As you read this page, keep in mind that suboptimal care of Sjogren’s arises from a dysfunctional health care system. Most rheumatologists are doing their best with the limited education on Sjogren's that is offered.
If you are reading this page for the first time, avoid clicking the links until you have read the entire page. See TIPS FOR READING SJOGREN'S ADVOCATE to learn how to read and understand complex pages like this one.
How To Advocate For Yourself
Use the 3 P’s of self-advocacy: Prioritize, Prepare, and Practice.
Please read HANDOUTS FOR CLINICIANS for step-by-step instructions on how to find and share accurate, up-to-date information from credible sources with your clinician.
Self-Advocacy Should Not Be Necessary
You should not need to advocate for comprehensive care of a common, serious disease.
Until Sjogren’s education is widespread and reflects what is already verifiable in the (albeit limited) evidence-based literature, self-advocacy may be your best chance of getting the care you need.
Misinformation about Sjogren's remains widespread. Be prepared to counter MYTHS ABOUT SJOGREN'S and MYTHS ABOUT DIAGNOSIS.
Why You Need To Advocate For Yourself
Manifestations, both sicca (dryness-related) and systemic (non-sicca), are caused directly by the Sjogren’s disease process.
Manifestations are not the same thing as symptoms or comorbidities. Understanding the difference can help you communicate with your doctors.
Learn the differences between SIGNS, SYMPTOMS, AND MANIFESTATIONS
It is challenging to find a rheumatologist who is up to date and engaged with Sjogren’s.
Lengthy delays to diagnosis are the norm and systemic (non-sicca) manifestations are frequently overlooked because Sjogren’s is still widely, but incorrectly, viewed as an unimportant sicca disease.
Sjogren's is serious and systemic.
Every Sjogren’s patient, regardless of antibody status (e.g., SSA-positive / SSA-negative) or symptoms, should be monitored for a wide variety of systemic manifestations and comorbidities.
There is almost no clinical guidance for the routine monitoring of systemic Sjogren’s manifestations and, consequently, clinicians have no standards of care for non-sicca features.
Because clinicians have no official guidelines, patients often must make the case for why they should be monitored for systemic manifestations and comorbidities, sometimes one condition at a time. Sjogren’s Advocate synthesizes information from Sjogren’s experts (presentations, articles, etc.) and the few journal articles that offer recommendations for monitoring a subset of manifestations (e.g., lung disease).
Most Clinical Practice Guidelines (CPGs) do not show clinicians what to monitor.
The Sjogren’s Foundation CPGs are important self-advocacy tools for treatment, but, other than the pulmonary (lung) guidelines, they do not make recommendations for the screening and evaluation of systemic disease.
This is true for the European and British guidelines too (248, 249).
Rheumatologists vary widely in their Sjogren's knowledge and practice.
Because there is little Sjogren’s training or guidance, rheumatologists who keep up to date usually do this on their own time. It is common for rheumatologists to hold the outdated (and more convenient) view of Sjogren’s as a rare, mild, sicca disease despite the undeniable evidence showing that Sjogren’s is a COMMON, SERIOUS, and SYSTEMIC disease.
Comprehensive care always includes ongoing monitoring for a wide variety of systemic manifestations and comorbidities. Comprehensive care allows for timely diagnosis and treatment of systemic features in earlier stages, which leads to better outcomes. Rheumatologists who think that Sjogren’s is a mild sicca disease are unlikely to provide care that goes beyond sicca.
Don’t assume that your rheumatologist does not care about you or about Sjogren’s.
Most rheumatologists are dedicated, overworked, and doing their best with little guidance. Rheumatologists have many complex diseases to stay up to date on. They look to rheumatology leadership organizations such as the American College of Rheumatology (ACR) for guidance.
Sjogren’s is shortchanged because medical educators (who train medical students and junior doctors) mostly ignore or downplay the disease. Even rheumatologists, including Sjogren’s experts, continue to perpetuate long disproven misperceptions about the disease. Sjogren’s experts usually get most Sjogren’s information right, but almost every one of them is hung up on one or two myths / misperceptions. The particular myth tends to vary from one expert to the next. Sjogren’s myths will be addressed in more detail on an upcoming page.
The stunning lack of attention to Sjogren’s by medical education and at rheumatology conferences such as the annual ACR meeting, sends the message that Sjogren’s is unimportant. The lack of education and persistent misinformation on Sjogren’s is why Sjogren’s care is so often inadequate.
See SPOTLIGHT ON RHEUMATOLOGY EDUCATION to learn more about the disparity between Sjogren’s and other diseases at the 2021 ACR meeting.
Until widespread training is offered that counters long held, but incorrect, views about Sjogren’s diagnosis and care, patients need to self-advocate and work with their rheumatologists and other clinicians to receive comprehensive care.
Patients often need to self-advocate
and work with their rheumatologists and other clinicians
to receive comprehensive care.
Sjogren’s Advocate provides you with information
(synthesized from reputable sources), tools, and resources
that you can use to advocate for better medical care.
How To Work With Rheumatologists
To Achieve Comprehensive Care
The first step to working with a rheumatologist is to learn their approach to Sjogren’s.
Rheumatologists range from viewing Sjogren’s as a sicca syndrome to understanding (correctly) that systemic manifestations can be found in almost every patient if you look for them. Most rheumatologists land somewhere in-between.
The KNOW YOUR RHEUMATOLOGIST page helps you determine your rheumatologist’s view of Sjogren’s and makes suggestions about how best to work with them. The information on Sjogren’s Advocate is especially useful when working with clinicians who know that systemic manifestations occur but think they are rare and/or do not routinely monitor for them.
Even if your rheumatologist already monitors you for a wide variety of systemic manifestations, it is still helpful to discuss your care with them. Conditions such as dysautonomia or lung disease are sometimes overlooked by even the most knowledgeable rheumatologists.
To be effective at advocating for comprehensive monitoring of Sjogren’s
it can help to understand how rheumatologists make decisions about care.
The following are the factors rheumatologists use to decide when to monitor Sjogren’s patients for a particular condition (manifestation or comorbidity):
1. Whether they are familiar with the condition
Rheumatologists will know what most systemic manifestation are, even if they think it is not something caused by Sjogren’s. One big exception to this is autonomic disorders (DYSAUTONOMIA), such as postural orthostatic tachycardia syndrome (POTS) and orthostatic hypotension, which are highly prevalent in Sjogren’s. Some clinicians are only vaguely familiar with autonomic disorders and a few still think these neurological disorders are psychological in origin.
2. Their understanding of whether Sjogren’s causes the condition
Example: A recent review article by a renowned group of European Sjogren’s experts states that gastrointestinal (GI) disorders are not caused by Sjogren’s, despite evidence that they are.
See GASTROINTESTINAL (GI) MANIFESTATIONS for more information.
3. Their understanding of the number of patients impacted by the condition (prevalence)
Example: Many rheumatologists think that lung disease is rare, or at most, impacts 10-20% of patients. While 10-20% is the usual prevalence quoted in the literature, it comes from reviewing medical records where the norm is to evaluate patients with severe or obvious symptoms. Research studies that evaluate every Sjogren’s patient, regardless of symptoms, found that more than half had lung disease caused directly by Sjogren’s. When clinicians understand the actual prevalence of a condition, they are more likely to order the recommended screening tests and refer mildly symptomatic patients for a full evaluation.
See WHAT YOU SHOULD KNOW ABOUT SJOGREN’S LUNG DISEASE for further explanation and self-advocacy tools.
4. Their assessment of an individual’s risk of having this condition
Example: A common misperception is that SSA-negative Sjogren’s patients do not get serious systemic manifestations. They can and they do. SSA-negative patients are less likely to be diagnosed with Sjogren's and, once diagnosed, are less likely to receive comprehensive care.
See DO YOU HAVE ANTIBODIES? for more information.
5. Their understanding of whether the condition can be detected even when there are no obvious symptoms
Example: Lung, kidney, and liver disease often have no obvious symptoms until they have far progressed and caused irreversible damage. They can be detected early on by routine screening. Discovering lung or kidney diseases in the early stages when they may be asymptomatic allows for earlier treatment and better outcomes.
6. Their understanding of how serious the condition is and the consequences of delayed diagnosis and treatment
Example: If screening makes little or no difference in quality of life or outcomes, it may make sense not to screen asymptomatic patients. Ordering X-rays or ultrasounds to look for arthritis in a patient without joint pain may not always make sense. However, those tests might be helpful to guide treatment in people with joint pain and stiffness.
On the other hand, discovering lung or kidney diseases in the early stages when they may be asymptomatic allows for earlier treatment and better outcomes.
7. The ease, expense, and availability of tests and access to experts
Steps For Self-Advocacy: Prioritize, Prepare, Practice
WARNING!
If you are having a medical emergency,
contact your doctor and/or go the emergency department right away.
As explained on the DISCLAIMERS page,
the information on Sjogren's Advocate is for educational purposes only
and is not meant to be used as medical advice.
Prioritize
Prioritize and tackle individual issues because clinicians have limited time with you
and little guidance on what systemic conditions to look out for and how to care for Sjogren’s.
Though you likely have a big list of concerns, do not expect to get help with all of them in one appointment.
Each Sjogren’s patient is unique and will have different priorities at different times. I highly recommend joining Smart Patients to get input from other patients about prioritizing your specific concerns.
Prepare
Learn what comprehensive care looks like and compare that to what you are getting.
WHAT IS GOOD SJOGREN'S CARE? provides an introduction to comprehensive care.
Learn as much as you can about an individual problem by using the search bar on Sjogren’s Advocate to search for all the blog posts, resources, and information about your problem.
The Sjogren's Foundation also has excellent resources and is a good place to start for general information.
Based on your priorities, choose reliable academic resources to share with your clinicians, as explained on the HANDOUTS FOR CLINICIANS page.
Practice
It is easy to get sidetracked or feel intimidated when talking with your clinicians.
It is much easier to be confident when talking to your clinicians if you have practiced what you are going to say.
Please read HANDOUTS FOR CLINICIANS for step-by-step instructions on how to find and share accurate, up-to-date information from credible sources with your clinician.
Self-Advocacy Should Not Be Necessary
You should not need to advocate for comprehensive care of a common, serious disease.
In an ideal world, clinicians would have time and training to provide comprehensive, up-to-date care. Most clinicians want to do a good job but are limited by what they know and the system within which they must operate.
Rheumatologists need to know how to care for many complex diseases. They look to rheumatology leadership organizations such as the American College of Rheumatology for guidance. Unfortunately, the message that rheumatologists get from their medical educators and leadership organizations is that Sjogren’s is unimportant, especially in comparison to closely related diseases such as rheumatoid arthritis and systemic lupus erythematosus.
Until Sjogren’s education is widespread and reflects what is already verifiable in the (albeit limited) evidence-based literature, self-advocacy may be your best chance of getting the care you need.
Many clinicians are receptive to a collaborative approach as outlined in HANDOUTS FOR CLINICIANS.
Until our broken healthcare system is fixed,
remember to prioritize, prepare, and practice asking for the care you need.
Updated 01-02-2024