Getting real about better care

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.