Getting real about better care
Updated: May 22
Let me be clear. I find the current state of Sjogren’s care heartbreaking and difficult to write about. I also believe that patients deserve my honest assessment of the situation. My experience as a patient, a Sjogren’s medical educator/ speaker, and an active member of the Sjogren’s community for nearly two decades informs my assessment of Sjogren’s care. Most patients who spend time in online Sjogren’s support groups will not find what I have to say surprising.
I wish that I had understood early on how disconnected most clinicians are from the needs of Sjogren’s patients. It was shocking and confusing to me when encountered so many clinicians, including rheumatologists, who knew so little about Sjogren’s. I finally realized that this was the norm, not the exception. I started going to every medical visit and specialty referral armed with a few carefully selected articles and resources. I have had the good fortune of being cared for by two excellent rheumatologists over the years. I have also consulted with rheumatologists who I would never see again due to their dismissive attitudes and ignorance about even well-known aspects of the disease.
The dilemma: Sjogren’s practice often does not meet the reality of the disease.
Sjogren’s is a serious systemic disease. It can impact every part of the body. Systemic features can be found in almost every patient who is thoroughly evaluated. Yet it is often hard to get an evaluation for all of the important aspects of Sjogren's. I aim to specifically address the following questions in an upcoming series of blog posts:
1. How did we get here in the first place? Why are so many rheumatologists disengaged with Sjogren’s?
2. What specific steps can patients take to improve their care?
3. How do you talk with a rheumatologist who seems out of touch with Sjogren’s?
4. What specific resources can you use for working with them?
Earlier in my disease, I had to work very hard to convince my first rheumatologist to even consider the possibility that I had Sjogren’s, despite classic symptoms and a family history of rheumatoid arthritis. Like so many patients, I was seronegative and did not fit the diagnostic checkboxes for many years. I often wondered how patients without a medical background managed to get the care they need.
I created Sjogren’s Advocate so that patients would be better able to advocate for themselves. We should not have to do this. Sjogren’s patients should be able to rely on their doctors to be knowledgeable about their disease. But optimal, or even adequate, Sjogren’s care is not the norm.
The result of Sjogren’s neglect is that many patients need to learn a lot about their disease to get the care they need. I know of no other common, serious, well-characterized disease where this is the case. Rheumatology practice must change to meet the serious challenges that Sjogren’s patients face. Until this happens, patients must learn to advocate for themselves in a health care system that tends to ignore and dismiss Sjogren’s.
The upcoming blog series will lay out self-advocacy tools step by step. It takes a lot of time and energy to create these pages. Please be patient with how quickly these tools come out. It will take some time to include all of the steps before they can be put into effective action.
It is important to read each blog post carefully. It helps to go back and review the content of related posts and the Always Systemic page. It is a lot of information to absorb.
Blog posts vs. webpages: the difference is important
Blog posts feature a variety of topics, including my analysis, opinion and commentary about the state of Sjogren’s care.
Not all of my blog posts are “editorials.” Some of them are more like miniature webpages, highlighting short topics that cover straightforward medical information. Examples of informational blog posts: Neurological complications are often overlooked, or How dry are your eyes?
Webpages. In contrast to the blog, webpages such as Always Systemic mostly focus on core medical content. These pages allow the reader, even without a medical background, to learn details about current Sjogren’s knowledge. When patient stories or commentary are included on those pages, they are clearly labeled as such.
The extensive citations on these pages are drawn from the peer reviewed literature, and reflect the work of many Sjogren’s experts. Citations allow the reader to refer directly to the source material that backs up my work. Citations are important self-advocacy tools. This blog post gives an example of how to use citations with your clinician.