We all make these lists on a sheet of paper to talk to our doctors about. Both our body and thoughts are messy and complicated. It’s not easy to talk about everything we are thinking about. It’s twice as hard to talk about what we are feeling. Can we help our doctor understand?
That subject comes up frequently when I’m speaking with and mostly listening to doctors associated with the AASLD. They wish their were a special language that would help them understand all of the spaces between the words we say.
The F Word
So many people tell me that their blood pressure goes way up at the doctor’s office. They can take it at home, but when they get back in the little room, their heart starts pounding and they can’t breath. Next thing you know, the blood pressure cuff gives a guilty verdict. The home blood pressure cuff says we’re fine, but there is something about telling our story to the expert that gets us all ratcheted up with fear, frustration. So much goes unspoken and in 20 minutes we’re back in our car.
Guilt
Speaking of guilt – what are we guilty off? Most of the time it is just stress. We take the mental list, our heart full of emotions, and the wadded up paper list – then we go in to try to get our needs met. Sometimes we may be guilty of wanting more than the doctor can even give. (Can you give me permission to eat pizza and cake every day?)
I think there is even such a thing as being guilty of wanting less that the doctor wants to give. (You really care enough about me to tell me the truth? That puts the responsibility back on me…and I personally have a hard time when someone is overly generous and kind. It causes a ripple in my stoicism.
Is that what this is about?
So that’s what this is about. Receiving kindness and wisdom from our medical providers. Trusting that they truly want what is best for us.
What does our doctor want to know? How should these important conversations unfold? For me, a huge portion of time is spent hoping that they’ll see how hard I’m working at being alive. I have this fear of getting in trouble. That may stem from varices bleed outs and paracentesis and having people care for my body fluids when I was a hot mess.
I want to have plain speak with my doctor. I want to be totally honest and make real change for my future.
Turns out, our doctor’s want the same thing. When I started getting involved with the American Association for the Study of Liver Disease or AASLD, my heart melted at how much the doctor’s are straining to understand how WE feel about the whole process. They know that medications and procedures can help us live longer stronger. In addition, eating well and making lifestyle changes also increase our longevity.
Our medical providers are betting their careers on the fact that we really deserve to have a better life. They want to talk about how we will talk more with them. They want us to open up and give them credit for being the magnanimous men and women that they are.
We’ve all encountered the less than kind words and actions from our doctors. But I’d like for us to begin assuming that they want what’s best. In fact, I’m so convinced that this year at The Liver Meeting, TLM in Boston, a group of doctor’s and I will be discussing just that.
Can we help our doctor understand?
So it seems we CAN help our doctor’s to understand what we want and need. I love this kind of stuff and hope to see you all at TLM either online or in person. Here are some links to the patient pages on the AASLD website.
