For the first time, these statistics made personal sense. I imagined that if I did not have the credentials or the backstage pass into the health care system -- if I was "the average patient" -- perhaps nothing could have navigated me through getting the right diagnosis and treatment for my pain.
I had been bounced from specialist to specialist in the greater Boston area where, despite my significant contacts were dismissed summarily to other specialists when my symptoms were confounding, and endured innumerable repetitions of paperwork, exams and lab protocols, many duplicating those done only days earlier.
I had experienced the emotional distress of a first-hand look at healthcare systems gone awry; even within the same healthcare system, clinicians had not consulted with each other, clinical record errors were passed on and further misconstrued, and countless dollars were unnecessarily expended.
Worse, no one seemed the least bit concerned. If I occasionally pointed out the lack or break in process, I was frequently met with a blank stare. It was almost as if no one cared, as if they themselves were not part owners of the process that was operating.
This problem persists in more places across the nation than just my neighborhood. Online patient chat boards echo the same story, and many chronic disease advocacy organizations, besides those dedicated to Sjogren's, spend entire meeting sessions dedicated to helping their members navigate a difficult to diagnose condition.
There's no cure for Sjogren's, but there are treatments to manage the symptoms. While it may be difficult for many of us, except for researchers, to curb the prevalence of chronic conditions like Sjogren's syndrome, there are certainly ways to reduce the personal cost burden and the frustration.
First, write a simple timeline of your problem connecting dates and symptoms. I tried to keep my timeline as concise and accurate as possible. Second, carry copies of your records with you for any visit. Despite electronic medical records, many doctors still aren't using them and, in any case, they usually can't see things across different healthcare systems. I owned my medical chart and it helped me understand my condition better throughout the process.
Third, persist. Don't discount your feelings if you think something is wrong. Experts are highly skilled and deserve the same respect given to you, but even they can't keep up with the flood of new discoveries being made. Be sure to put your most important questions first, in case the doctor and you run out of time.
Finally, for a perplexing or very serious problem, seek out a medical center of excellence, preferably one that explicitly advertises itself as putting patients first. The system in the Midwest had this motto written everywhere, and it actually turned out to be the way people treated each other.
Diagnosis of what can be a progressive disease is a bittersweet experience. I learned that being an expert did not automatically make me an informed patient. Until bigger changes are made among healthcare stakeholders and experts -- the implementation of electronic medical records, more emphasis on patient-provider communication – it's up to patients to find shortcuts in the maze, and share those pearls of wisdom with those of us who took the long way to better health.
Jessica Wolfe, MPH, PhD, has been an entrepreneur, behavioral researcher, and executive in healthcare, health sciences, and public health for over 30 years.