One thing those of us who have traveled for a time down the chronic pain road find out is that not only is the road is full of nasty potholes, but you have to be your own navigator and driver.
My fantasy about how the health system works was that I would be handed maps, chauffeured, and have a team of mechanics making sure I traveled safely. I expected the system to diagnose me, to put me in the hands of an expert treatment team who were in regular communication with each other about the nuances of my care needs, and to make me better.
The diagnosis never happened. The team wound up being a constellation of players my husband and I located. And I was the communication coordinator, carrying my case notes and test results with me from appointment to appointment. At first I resisted playing this role - which was really resisting letting go of my fantasy of being taken care of. But eventually I had to accept that it was up to me and my partner to orchestrate my care.
I blog about relationships and illness at www.insicknessinhealth.blogspot.com