I wish the world knew that although I am not my disease it’s still an important component in my life. Specifically when it comes to Medical issues. That doesn’t mean that at the top of my chart it should say “Patient has Bipolar Disorder”. I have seen myself identified this way too many times. I would think “Patient has Chronic Kidney Disease and Celiac Disease” should come first. They don’t.
As soon as a new Doctor or Nurse sees this on my chart I know. How, you might ask? Because suddenly I am treated like an incompetent child. The Nurse or Doctor will speak louder, some become impatient with me because it’s hard for me to speak. They are short with their answers or ask if I have someone to come with me. Then when I bring someone with me they will only talk to them and not even look at me.
I was recently scolded for calling a doctor’s office to ask a question about some lab work. I was dismissed and treated like I wasn’t important enough to give a sliver of compassion to. I’m 43 with what they’re are telling me is only 1 good kidney and a condition no one knows about or can fix. I will have to have some kind of foreign object inside of me for the rest of my life to keep my kidneys working. That foreign object causes pain and is often prone to infection so it will have to be changed every 4 months. AND at some point I may have to have tubes come out of my back like a science experiment. But the Medical professionals I have dealt with do not care how I “feel” about any of it.
I am listed as a “problem patient” because I have trouble with anesthesia and I get emotional. Other doctors can see this when they look up my name. So they are automatically forming an opinion about me before our meeting.
One Doctor told an entire staff of people right before my surgery that I was a “demanding one! Watch out for this one! she sure is demanding!” all because I didn’t want the surgery done where my mother had died. The same hospital where I was when my kidneys failed. The one that had no running water for 8 hours, a nurse said she should pretend to be Bipolar so she can lose a 100 pounds, and they made me unplug myself to go to the bathroom that was down the hall, while my kidneys were being flushed with an IV. Why would I want to be in that same hospital???
It’s bad enough being dismissed in my regular life but these people should know better. The nurse should have known that people in kidney failure LOSE WEIGHT! It wasn’t just my Bipolar meds. I was almost dead and down to 119 pounds!
There will be angry people in Rhode Island soon. I refuse to be treated like shit stuck on someone’s shoe by the people that are suppose to help me. I will be getting all new Doctors. If I have to go 3 states over I will find someone who cares if it kills me. And it probably will.