Good Doctors and Not So Good

I've learned a lot from having a chronic illness. Specifically about the American medical system and those who work for it. I think I had some serious rose tinted glasses when it came to doctors. Overall I'd had good health and anything wrong with me had been very straightforward. Even my years of endometriosis. But when it comes to having something that there isn't a clear test for or that requires years of multiple people guessing at what's going on with you, then that's where things get more dicy.

Doctor's don't like the word "guess" even though that's what they do with me. I have a rare condition that they "think" they know something about even though all they're really doing is guessing. It's a "best guess" but still just a guess none the less. 

I've learned that some people really suck at bedside manners. Some doctors think I'm doing a "self fulfilling prophecy" and "not trying hard enough to be well" (real quotes.) Others think they know exactly what's wrong with me and respond in frustration when I continue to be sick. Some are fantastic in person and then never respond to my messages between my three month appointment wait times. Some say they're going to give me referrals for services they think will help and then don't, or do it a month+ later (typically after I message them repeatedly). 

All of this takes a ton of time and energy. I told my husband the other day that when people ask me what I do for a living I should just say "I'm sick" because it's seriously a full time job.

Because I'm a visual person I'll show you how most of my appointments start out:

And then it can go one of two ways.

Poorly...

Or

Well...

I've only walked out of an appointment once. And let me say that it took me a very long time to even comprehend that just leaving is an option. They are there for me and if they're not helping, or worse... I can always just get up and go. No need to waste my time or theirs.

In general my encounters have been very positive. Most doctors genuinely care and are trying their best to help me. Some even admit that they don't know much about my condition and are just trying their best to help my symptoms. I seriously appreciate that.