How to be a Power Patient

Most chronically ill people don’t know how to be a power patient – it’s not instinctive, or it’s been beaten out of us from years of depressing results. For us, the experience of going to doctors for answers is usually the same: we stumble our way through our origin story, trying to piece together the mish-mosh of facts for the umpteenth skeptical specialist, and willing ourselves not to…just.don’t.cry.this time. But it’s so hard. We are searching for a proper diagnosis or treatment plan, and we are often turned away again and again with no answer, the wrong one, or even worse, my personal favorite, that it’s US who is causing our symptoms. We are too___ or not enough____, and usually this involves wastebasket pronouncements related to stress, anxiety, diet, etc.

It’s enough to make anyone want to cry.

By the time we reach a doctor’s office, so many people have told us that nothing is wrong with us, that it is all in our head, or that we are responsible for most/all of our suffering, the stakes are incredibly high before we even walk in the door. I can’t do this to myself again, we tell ourselves. This one has to believe me. If they don’t, I don’t know what I am going to do. These appointments make us feel small, alone, and drained.

Sound familiar?

But there is another way to approach your medical experience. Here are 5 ways for you to take back your power, and get the most out of your doctor/patient relationship.

1. DOCUMENT: Do you struggle with telling your story? Have brain fog or choke up and get teary? Write it down! Doctors are fact-finding miners – even though we think they are “compassionate listeners” who want nothing more than to hear to us tell our story, they just play that on TV. They are scientists whose main job is to weed through all of our words to find the puzzle pieces to put together to help us. We can make their job easier by handing them a document that details our story neatly told, that we have taken the time to create and update over time. I think that sometimes we feel the more emphatically we express our suffering, the more we will be believed, and then we are surprised when this doesn’t work. Remember who we are dealing with: science-minded people who care about easing suffering, yes, but have to compartmentalize that in order to be successful at their job in the long-term. So, the more we can dial down the hyperbole, the better. I’m not saying getting emotional isn’t OK, I’m just saying that it isn’t a necessary means for you to be taken seriously.
2. ORGANIZE: Keep all of your records in a labeled accordion binder that you can take with you to every appointment. This way, if the specialist asks you about recent lab results…got ‘em! Had a lumbar x-ray? Report in hand! It saves so much time and energy, and maximizes your time with the specialist, because now you can see them working with the data, instead of having them retrieve it later on when you are not there. Don’t forget to make a medication list! That thing is usually long and changes all the time, and it will save you precious energy during appointment intake.
3. ATTITUDE: Before you walk in that office door, check up from the neck up: how do you see yourself in relation to the provider? Are they the expert? Who are you? As far as I am concerned, we are partners. They are the expert in their field, and I am the expert in me. Our relationship better be collaborative, or I fire them, because I AM THE BOSS. That’s right –  I hire and fire my doctors. They work for me. This doesn’t mean that I treat my doctors poorly, or like subordinates: I prefer to use honey to attract flies rather than shit. However, I think that many people feel intimated by their healthcare practitioners, and this is one way we can get our head in the game.
4. OPTIONS: Before signing off on any care plan that makes you uncomfortable, realize that you have options. Get a second opinion. Get a third. Get a fourth! Any doctor that makes you feel bad about seeking multiple opinions is A BAD DOCTOR. This is your body, and you have every right to get as many expert opinions on your condition and care as you feel is necessary. Don’t feel bad about not committing to something until you have had the time to go home and research it. You are the expert in you, not whatever drug/surgery/therapy this person is proposing. Call a time out, go home, and do your due diligence!
5. RESEARCH: It can be helpful if you print out research articles and bring them in for discussion during your appointment. As your doctor is a scientist, he/she is much more likely to read and respect a primary source from a medical journal, and less likely to care about what you read in some blog (Except mine. Mine rocks, ha ha.) For those of you who do not know the difference between primary and secondary sources, primary sources are the original version of a topic while secondary sources are any version of something that is not a primary source. In the case of say, a breast cancer study, a primary source is the study article itself, while a secondary source is another article done by someone else who read the breast cancer article and cited it, like a newspaper article about the study. When considering research articles to share with your provider, the source is very important!

I hope that these tips help you take back your power and energy, and improve your relationship with your doctors. Most of them really are here to help us: we just have to know how to work with them.