Sjogren’s patients face unique challenges finding good care in a broken health care system. Rheumatologists are supposed to take the lead role in managing Sjogren’s but don’t always step up to the plate. This blog post is the first in a four-part series about “Sjogren’s Neglect.” Understanding why Sjogren’s is often overlooked and misunderstood can help patients better advocate for themselves.
All too often, patients report dismissive and psychologizing comments made by clinicians, including rheumatologists. It is hard to find a Sjogren’s patient disabled by fatigue or dysautonomia who has not been told that their symptoms are caused by depression or stress. Yet research has shown that dysautonomias are a common neurologic complication of Sjogren’s. Severe fatigue is consistently reported by patients as the most disabling feature of the disease. Fatigue and dysautonomia are direct physical manifestations of the disease process, independent of depression and other psychological disorders, even when they co-exist (27).
The following comments made by rheumatologists to Sjogren’s patients are shared repeatedly in online discussion groups:
I don’t see Sjogren’s patients; there is nothing that can be done.
Sjogren’s is mostly a nuisance dryness disease.
Sjogren’s patients do not need to be followed.
Sjogren’s does not cause ____ (fill in the blank with a common systemic Sjogren’s feature).
Statements like these harm patients. Downplaying the seriousness of Sjogren’s based on long-outdated thinking leaves many patients feeling hopeless that they will find help. Some would even call this medical gaslighting. Dismissive comments erode trust, not just in one provider, but in the medical system overall. While the lack of training of non-rheumatology providers is problematic, it is even more disconcerting that so many rheumatologists are unwilling or unable to provide comprehensive Sjogren’s care that reflects the systemic nature of the disease. Many remain unaware that Clinical Practice Guidelines exist, along with other wonderful resources from the Sjogren’s Foundation.
Sjogren’s is a serious systemic disease. The burden of illness is often high. Even patients with milder manifestations are at risk for complications, comorbidities, and progression. Rheumatologists can do a lot to help Sjogren’s patients. This often takes creativity and patience due to the complexity of the disease. I am lucky to be cared for by a wonderful rheumatologist. While it may be best for patients to move on from rheumatologists who are not up to date, there are some who are willing to educate themselves as needed, especially when presented with concise and reliable resources. It is often the most knowledgeable and assertive patients who get the best care.
For a sobering look the neglect of Sjogren's at every level of medical education, see the next three blog posts, Sjogren's neglect II-IV.
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