My Sjogren’s story

Following a minor surgery in 2002, flu-like fatigue, GI symptoms, and pain hijacked my life. This was not the flu. Weeks, then months, went by with no improvement. Mostly bedridden, I was unable to work or even drive my children to school. That turned out to be the end of my 15-year career as a public health physician and the loss of many dreams and plans for the future. 

   

After my internist ruled out obvious infections, she referred me to a number of specialists. If these doctors had been familiar with Sjogren’s, they might have noticed my nearly textbook presentation. A history of longstanding dry eye disease (including punctal cautery), intractable sinus infections, GERD, and gastritis, together with my presenting complaints, should have raised the possibility of Sjogren's. But the specialists kept telling me there was nothing seriously wrong. Like most Sjogren’s patients, I looked well. My doctors simply could not grasp how sick I really was.

   

Desperate for a diagnosis to explain my incapacitating illness, I began to read the medical literature on my laptop in bed. When I realized that my symptoms looked a lot like Sjogren’s, I asked to see a rheumatologist. At first he did not agree with my assessment because my tests were normal. After vigorous self-advocacy based on my research about the limitations of diagnostic tests, he agreed to follow me and start treatment. Seven years later, a second “lip biopsy", along with progressive dryness measurements, confirmed that I definitely had Sjogren’s. I am certain that being an assertive, knowledgeable patient has been key to getting good care over the years.  

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What inspires me to work on Sjogren's Advocate 

I am passionate about helping other Sjogren’s patients because my personal experience has been so devastating. I created Sjogren's Advocate because I wanted to make the path easier for people who do not have the medical background to advocate for themselves in a system that fails to adequately diagnose and treat the disease. I often wonder if I had been diagnosed earlier, would I have gotten so sick? Would treatments have been more effective? Would I still be able to do "normal things" like work and travel? I'll never know, but I hope that this website helps other patients counter long delays to diagnosis, misinformation, and clinician disengagement with this common and serious disease.
 

It is gratifying to hear back from patients who tell me that Sjogren's Advocate helped them get diagnosed. Others have shared that Sjogren's Advocate information was key to getting care for a previously overlooked Sjogren's complication. A number of primary care providers subscribe to email updates because they find the information practical for clinical use. 
 

While I actually enjoy researching and writing, my ability to do this is limited by severe daily fatigue and pain  caused by Sjogren's, spondylitis, and POTs. I simply cannot work for long stretches of time. Many people are surprised to find out that I remain too disabled to practice medicine, travel, or do many of the things I love to do. Working on Sjogren's Advocate helps me feel connected, productive, and intellectually engaged. 

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As much as I would like to answer questions about your individual situation,

I cannot and will not offer individual medical advice or substitute in any way for direct care.

However, I always welcome stories, general questions, and comments from patients.

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I hope that patients will use this website to feel more confident advocating for themselves. I hope that clinicians will find the information to be inspiring and valuable.

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Sarah Schafer, MD and Sjogren's patient  

 

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