One of the biggest challenges that Sjogren’s patients face is finding a rheumatologist who recognizes the serious systemic nature of the disease. Sometimes it is best to move on; other times rheumatologists are willing to become more up to date on comprehensive Sjogren’s care.
This new page in the Resources section links to printable handouts that you can use with your clinicians. For rheumatologists, it is best to offer carefully selected articles from the peer-reviewed literature, Clinical Practice Guidelines, and other materials created by the Sjogren’s Foundation. Rheumatologists may not be receptive to material from Sjogren’s Advocate. While I have extensive knowledge about Sjogren’s, I am an MD-patient, not a rheumatologist.
Please be sure to read “Sjogren’s: the patient perspective” (161), an exceptional article authored by Kathy Hammitt of the Sjogren’s Foundation. She describes what it is like for patients to deal with clinicians who are out of touch with Sjogren’s.
NOTE: Click on the little orange box in the upper right hand corner of the link to get the printable PDF version.
I particularly appreciate these quotes from the article:
1. “Sjogren’s is under-recognised and misdiagnosed.”
2. “When we focus on Sjogren’s as a disease of middle-aged and post-menopausal women and one that is marked primarily by dryness, we miss important sectors of our population that might have Sjogren’s.”
3. “Patients suffer from symptoms that are not managed medically by anyone.”
4. “We must do a better job recognising the many systemic complications of Sjogren’s.”
5. “80 % suffer from crippling fatigue”
6. “Up to 40 % of Sjogren’s patients will have neurological symptoms that antedate sicca manifestations.” Yet most of these patients remain undiagnosed until sicca symptoms appear.
How to use Kathy Hammitt’s article for self-advocacy I urge you to read the entire article, print it out, and highlight the parts that you want your rheumatologist (or other clinician) to read. Discuss the areas that you would like them to consider, using a diplomatic, inquisitive approach. Confrontational approaches are not helpful. In many cases, just asking them to read and consider the article is a good start.
Examples:
Does your rheumatologist say that your Sjogren’s turned into lupus? That Sjogren’s is secondary to or caused by another disease? These inaccurate terms and ideas are harmful. There is no primary or secondary Sjogren’s. You either have Sjogren’s or you don’t. You can counter this misinformation by highlighting the paragraph starting with “Words Matter” on the second page. All Sjogren’s patients deserve Sjogren’s-specific care, whether or not they also have another major connective tissue disease.
Do you have disabling fatigue that is not being taken seriously? Kathy Hammitt’s paragraph about fatigue knocks it out of the ballpark. I particularly appreciate her description of fatigue as “overwhelming, engulfing, earthshattering, toxic, bone-tired draining of life force.” The entire paragraph about fatigue is useful for educating clinicians, friends, and family about this extremely challenging disease feature.
You can take action to help counter damaging, outmoded ideas perpetuated by clinicians and others. Almost every Sjogren’s patient I have met has had their symptoms treated dismissively at some point. Serious systemic features are often overlooked until they are far progressed. Until we consistently (and diplomatically) let clinicians know we expect better care, the current status of Sjogren’s neglect will persist.
See MYTHS ABOUT SJOGREN'S and MYTHS ABOUT DIAGNOSIS for more self-advocacy tools.
“We can no longer remain silent about the devastation wrought by this common, yet complex, disease.” ~ KM Hammitt in her article, Sjögren's:the patients' perspective. (161)
