Being Your Own Advocate

Whether in health care or elsewhere in the world, being your own advocate is hard work. It’s also risky, sometimes. You risk damaging relationships when you don’t just role over and play nice. You risk losing the deal when you stand up to a salesman, editor, or agent, even if it’s for a good cause. Most of the time, the risks are worth it, in my opinion. Who wants a relationship where they get walked on all the time anyway? And who wants a deal that takes advantage of the buyer, or in the case of a book, the author?

But the risks are still there. I ran up against this one Friday with my cardiologist. I found out that he wasn’t including important parts of my symptoms, treatment, and progress in his notes to my other doctors. So I asked to review my file prior to my appointment. I discovered that not only was he failing to record one of the most important, and debilitating, symptoms of my heart problem, he also lied to me about the results of one of my tests. “Perfectly normal” doesn’t really fit when the report says there were changes on my EKG indicating ischemia (lack of blood flow/oxygen) to my heart after only 5 minutes of very slow walking (slower than I would normally walk down a hallway when I was at work as a nurse). At the age of 33 (32 at the time of the test), I think that qualifies as a poor tolerance for exercise!

Now, when I’m not on personality-changing medications (bisoprolol, anyone?), I’m a pretty congenial person. I’m also a reasonable person. So rather than stomp my feet and yell and get demanding, I sat through the pre-appointment screening, got weighed, had my blood pressure taken, and told the nurse how I’d been between that appointment and the last. When the doctor came in, I explained that I had noticed his notes didn’t mention syncope (losing consciousness), which I’d experienced and reported to him several times, and asked why that was.

My doc replied to me that I had never had any syncope. At which time I mentioned that the episodes I’d reported were in his nurse’s notes for each visit. He flipped to that part of my chart, looked at the note and told me he’d include it in his note for this visit and that I should find a new cardiologist. He said I obviously no longer trusted him, and so he didn’t want to continue treating me.

There’s a difference between blind, unquestioning faith and trust. No doctor should expect the former. If asking a simple question about how he was reporting my condition to my other doctors causes him to drop me as a patient, well… all I can say is that he beat me to the punch. I’ll be seeing someone else for my future cardiology needs, and once the feelings of being ignored, mistreated, and pacified fade, perhaps I’ll find a doctor who can respect that I have a mind and opinion of my own and bigger stakes than he will every have in managing my own care.