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
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Barbara,
I was just thinking about this subject today. I was telling a friend about how my time is spent, on the average day. I realized that at least 25% of my time was spent on the job of coordinating my care between my doctors, dealing with insurance companies and researching the latest and best options for my treatment.
It feels a lot like a job, one that at first I was unqualified for. I am beginning to feel more comfortable in my role of "health coordinator", but I still have the same fantasy as you do. I still imagine a team of doctors, insurers, nutritionists, etc. working together to come up with the right treatment plan for all of my illnesses, instead of going to separate doctors for everything, and having to navigate all of the insurance issues by myself.
Thankfully, we have sites like this one, where we can help each other manage the full time job of haveing chronic pain and illnesses.
Jenny