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  • Writer's pictureSarah Schafer, MD

Why is it so hard to get diagnosed?

Updated: Apr 8

Delayed diagnosis and misdiagnosis are the norm in Sjogren’s; This problem is a direct consequence of the failure to educate clinicians with up-to-date information about the realities of the disease. By the time people are diagnosed with Sjogren's, the disease has often progressed for decades, leaving them without the care they need and deserve.


Clinicians are doing their best, but when they are taught that Sjogren’s is unimportant to learn about or diagnose, they have no reason to think otherwise. Because I wanted to help others avoid the struggles I had getting diagnosed with Sjogren’s, and despite ongoing, debilitating symptoms, I started teaching small groups of local primary care practitioners (PCPs) about Sjogren’s in 2014. My presentations on Sjogren’s included lively discussions with engaged, motivated clinicians. They asked a lot of questions because they were eager to learn. They were familiar with related diseases such as rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE) but no one had taught them the basics of Sjogren’s, even though it is about as prevalent as RA and three times as prevalent as SLE. 


After teaching more than 200 PCPs, I discovered that:

  1. Despite significant advances in Sjogren’s knowledge over the past 30 years, clinician education has not kept pace. Most PCPs, including recent medical school graduates, were taught that Sjogren’s is a rare, mild, dryness disease that is unimportant to learn about. I was taught this same dismissive message in medical school 30 years earlier. 

  2. Only one clinician (of more than 200) had ever attended a lecture on the topic of Sjogren’s during medical school, residency training, or in a continuing medical education course. 

  3. Not one PCP had ever considered Sjogren’s as a possible diagnosis in a patient, even in patients with typical presentations in primary care settings such as chronic cough, cognitive dysfunction, neuropathy, fibromyalgia symptoms, or joint pain. PCPs were surprised to find out about the wide variety of systemic manifestations and even more surprised that some of these can be life-threatening.

  4. Fewer than five PCPs thought they had ever encountered a person with Sjogren’s in any context even though is a common disease.


Myths about Sjogren’s and how it is diagnosed remain widespread in the medical community. People seeking diagnosis often need to advocate for diagnosis. Use the DIAGNOSIS section of Sjogren’s Advocate to learn about the uses and misuses of diagnostic tests.  


A Sjogren’s patient on X (formerly Twitter) brought to my attention a powerful new handout from the Sjogren’s Foundation that you can use in various ways to advocate for diagnosis.

This handout, titled “The Difficult to Diagnose Patient”, is not posted on the Sjogren’s Foundation website pages about diagnosis, where you would expect to find it. Instead, it is listed on the Brochures & Resource Sheets page. On Sjogren’s Advocate, I refer to it as the "Sjogren’s Foundation Diagnosis Handout” because it can help every person seeking Sjogren’s diagnosis, including those with typical signs and symptoms who should not be “difficult to diagnose”. 


The Sjogren’s Foundation Diagnosis Handout (linked and explained below) is an important self-advocacy tool.  While all my content on Sjogren’s Advocate is backed up with scientific resources and citations, this Sjogren's Foundation handout provides clinicians with a high-impact summary that addresses the main barriers to diagnosis. Many rheumatologists will likely consider it authoritative because it comes from an officially recognized organization, potentially making your self-advocacy easier.


Who initiates Sjogren’s diagnosis? It is normal for PCPs to refer patients to rheumatologists when they suspect rheumatic diseases such as RA or SLE. However, because PCPs are not trained to recognize Sjogren’s, also a rheumatic disease, they seldom refer people to rheumatologists for a Sjogren's evaluation. Mentioning dryness symptoms can be helpful when discussing the possibility of Sjogren's with your PCP. Please see PCP STEPS TO DIAGNOSIS for more information.

Specialists such as ophthalmologists, dentists, neurologists, and ear, nose, and throat doctors (ENTs) are also likely to see early signs and symptoms of Sjogren’s, but many do not ask about symptoms beyond their area of expertise, therefore missing the opportunity for earlier diagnosis. 


Rheumatologists are the specialists who are supposed to confirm the diagnosis of Sjogren’s and provide ongoing care.

How rheumatologists diagnose and care for Sjogren’s varies widely because Sjogren’s is neglected even by rheumatology education programs. Over the past 10 years, I have attended every US Sjogren’s medical education program that has been offered online. While much of the information is helpful, the educators sometimes contradict each other about the fundamental facts of the disease. As of December of 2023, the classification criteria were routinely being taught as necessary to diagnose Sjogren’s, which they are not. The Sjogren's Foundation Diagnosis Handout does a good job of putting that myth to rest.  


Because I couldn’t change the medical education system, I founded Sjogren’s Advocate in 2018 to educate and empower people struggling to get care. Through Sjogren’s Advocate I am able to provide people who are struggling just like I did and do, with carefully curated, practical information, tools and strategies to counter myths and misinformation and to advocate for better care.  


HOW TO USE THE SJOGREN'S FOUNDATION DIAGNOSIS HANDOUT Use the Sjogren’s Foundation Diagnosis Handout to counter MYTHS ABOUT DIAGNOSIS as explained in the Self-advocacy Tools section under each myth. 


It is important to be respectful, but assertive.

Countering longstanding beliefs and practices can be intimidating and feel awkward. Refer to the HANDOUTS FOR CLINICIANS and the SELF-ADVOCACY FOR DIAGNOSIS pages for talking points and communication strategies.


EXAMPLE SCENARIO

Problem: You do not have a positive blood test for SSA, but you have many signs and symptoms of Sjogren's. Your rheumatologist tells you, incorrectly, that you can’t have Sjogren’s without a positive SSA test.


Self-advocacy steps: Find Myth 2 on the MYTHS ABOUT DIAGNOSIS page.

 

Show your clinician the handout or handouts with the sentences that you prepared and highlighted in advance as instructed in the Self-advocacy Tools section.


Practice a statement such as, “The Sjogren's Foundation has a handout about diagnosis. I would like to talk about how SSA/SSB is not found in many people with Sjogren’s.


Be cautious about using the bar graph titled, “Percentage of Respondents…” for self-advocacy.

This bar graph is part of a larger graph from the Summary of the Sjogren’s Foundation 2021 Patient survey results. The bar graph and the more extensive survey results are useful for showing the profound impact of Sjogren’s on quality of life, but this can backfire if your clinician does not think Sjogren’s is a serious, systemic disease in the first place.


If your goal is to show your clinician that  Sjogren’s is serious, systemic, and needs to be monitored, it is better to use the SJOGREN'S IS MORE THAN "JUST SICCA" handout.

Here is why: This bar graph on the Sjogren's Foundation Diagnosis Handout documents the prevalence of symptoms, which are not the same thing as manifestations. The symptoms listed do not represent the true spectrum of Sjogren’s because not all manifestations produce obvious symptoms, even some that are serious (e.g., early lung or kidney disease, cytopenia).  


This bar graph may not help you convince doctors that Sjogren’s is serious and systemic and needs to be monitored.  Even though many of the symptoms on the graph are caused by systemic manifestations, they are easily written off as fibromyalgia, irritable bowel syndrome (IBS), deconditioning, functional neurological disorder (FND), or used as a reason to psychologize the most distressing parts of the disease.


Please share this blog post with people who are having a difficult time getting diagnosed with Sjogren’s that you encounter in support groups and elsewhere.





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