Faces of Sjogren's: Sarah's Journey

describe the imageWhen I was diagnosed with Sjögren's, my first thought was…

“I told you so!”  For seven years I lived with debilitating fatigue, pain and malaise- and no diagnosis. Despite classic symptoms, my Sjögren’s antibodies and lip biopsy were negative. I was told I must have something else, perhaps CFIDS.  When a second lip biopsy confirmed Sjögren’s, I felt like saying “I told you so!”

There is no single test to diagnose Sjögren’s. Experts continue to disagree about diagnostic criteria. Each time I saw the rheumatologist, I told him my symptoms practically shouted Sjögren’s. He eventually agreed, treating me as “probably Sjögren’s.”

Getting good medical care when you don’t fit a disease checklist can be overwhelming. Many patients in my situation might not get treatment for years, if ever.  Because of my medical training, I was able to strategically prepare for my medical appointments and advocate for good care. 

I have learned a variety of strategies to stabilize my health, and reduce my symptoms and flares.  My current wisdom from years of experience would certainly have been helpful early on. I am much better now at sorting through what works for me with lifestyle, diet and alternative medicine.  I eventually found someone who really “got it” to help me cope with major losses such as career, friendships or being the parent I wanted to be. This was immensely helpful.

Today, I am the most hopeful I’ve been in years. My hard-earned wisdom has sparked my passion to help others dealing with this confusing and serious medical condition.

- Sarah

MD, MPH is a medical coach, mother and enthusiastic supporter of the  Sjögren’s Syndrome Foundation.

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