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.
Here are some of the strategies I learned for managing my own care:
(Let me preface this list by acknowledging that I believe there is white, educated, middle class, American-born, English-speaking, business-savvy privilege/bias involved on my part and perhaps unconsciously on the part of a few of the systems I interacted with).
- Write up your own case history and keep it updated. Make it complete, current, and succinct. Bring it to each appointment and give a copy to each new practitioner.
- If you’re looking for a specialist, it often pays to see the head of the department. He or she most likely got there because of excellent medical (and political?) skills.
- It can take three months, sometimes six, to get an appointment with a god-level specialist. So make an appointment now, even if you’re not convinced you need to. You can always cancel it (And remember to do so if you don't need it. Others are waiting).
- Find out if your doctor has email and will give you his/her address – and will use it as a channel for quickie communication. An example of a good use of email could be: "I had a minor headache that lasted about 30 minutes after I started the new medication. There have been no other headaches or side effects. Should I be concerned about this? Should I make an appointment to see you?" I use email with my pain specialist and my primary care doctor. I never overuse this channel and am respectful of the doctor’s time.