Jane Patterson's Story

In 2005 a rheumatologist (with minimal testing) diagnosed me with Sjogren's Syndrome, partially because he was determined to bring forth this condition to the public eye. To me, it felt like a square peg in a round hole. I went outside my insurance network to seek a second opinion and I was accepted into a clinical trial at UCSF. After extensive testing, I did not have all the markers needed for a Sjogren's Syndrome diagnosis. I was relieved and disappointed at the same time. If it wasn't this, then what was it? 

I've discovered over the years, that many doctors are more than reluctant to diagnose Fibromyalgia. They are afraid to be "that kind of doctor" by their peers and their medical group, as well as to try to manage pain. For the majority of primary care physicians, this is not something they are prepared for in medical school. So it is understandable why many doctors don't want to even try.

This has continued to be a cycle of hope and disappointment, with its many peaks and valleys throughout the years. However, I have learned to be polite, yet persistent, to do my homework but not throw it at the doctor the very moment she/he enters the exam room. I have learned to create a network of physicians who work well together and to do my part to keep accurate notes. It's going to be a long road and my life has drastically changed and will continue to do so. The changes and uncertainties of my future are very frightening, but I will continue to be politely persistent and speak up about my condition and all that goes with it, for I am the one who ultimately dictates what treatments work best for me and advocate for my heath with my doctors.

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