((Disclaimer: Much of this post uses my search for a diagnosis and treatment of dysautonomia, though it refers to many other types of chronic illness))
As a spoonie, I’ve had my share of run-ins with horrible doctors. My primary recently moved, and so I’m being forced to go through the process of finding a new one right now. The process is daunting, and, quite frankly, ridiculous. Once you have a diagnosis, as I do, it becomes a bit easier, but not much. Many doctors want to evaluate you themselves and make their own conclusions, regardless of what is in your chart. Some will brush off what you have, some will pretend to know all about it (when in reality they know less than Dr. Google), some will simply not care. The key is to know how to deal with each type. And yes, many times this can mean getting a new one.
Let’s start with the ones who tell you it’s all in your head. Straight up; most of the time, this is a fancy way of saying “I have no idea what you have, there is no current medical knowledge that can explain this, and so it all has to be made up.” This is what most undiagnosed spoonies go through for years, especially those with newer types of chronic illness (such as dysautonomia.) Because we live between flares, and it’s very difficult to get to the doctor in one, they aren’t able to see the things we complain about. My best advice here would be to continue to deny a psychologist referral. You have to stick to your guns and make them listen. Easier said than done, I know. I have gone through two of my new prospects because of this. At this point, I’m still switching doctors the moment they bring up a psych more than twice in a single visit. It’s easier to do this than to fight with them for another year before they listen to anything I say.
The world is full of people who don’t understand chronic illness and the medical field is no exception. Many people think that being sick is a temporary thing. In many cases, this is true. It’s difficult for those who haven’t experienced it to wrap their heads around the fact that we won’t ever be the same person we were before. Then, when told, they expect you to become sort of numb to the symptoms. Somehow, we’re supposed to “get used” to the very scary things happening to our bodies. I’m here to tell you that, sometimes, there is no “getting used to chronic illness.” Those that begin to shrug off your symptoms are becoming complacent while you’re the one dealing with them. This is especially horrible when it comes to doctors because this is when they stop trying to find ways to treat you. When this happens, you must find a new one. I know, I know; “But then I have to fight past the beginning portion all over again to get them to even believe me!” While that sucks, eventually you will find that one that constantly tries to help you. They will listen and they will take every complaint seriously.
And then there are the “know-it-all” doctors. These are the ones who tell you “Oh just change your diet and lose a bit of weight. That how you treat anything chronic.” While this is true in many cases, it’s also true for those without chronic illness. Anyone is going to feel better when they change their diet. That is a given because of our bodies. This is, again, another go-to answer for doctors. Now, I’m not saying not to listen to them. Our bodies work extra hard and need better sustenance than our counterparts. So, changing your diet is a very good idea. Though, if this is all that they can suggest to you, you might want to do some of your own research (in blogs, support groups, etc) and bring up some treatments that have helped others. You don’t have to settle for only the things they mention. You have the right to direct your own care.
We will all, at some point in our lives, be faced with incompetence in medicine. We must take our care into our own hands. We have to educate those doctors who are ignorant or rude. Nothing in our health care system will change if we all become complacent with being ignored.
What other types have you encountered and what advice would you give to those who encounter the same??