Faces of Sjogren's: Sarah's Journey
When 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.
MD, MPH is a medical coach, mother and enthusiastic supporter of the Sjögren’s Syndrome Foundation.