When I come into your office with my child, please consider that I have already taken my child to many doctors before we landed on your doorstep. We have been given many different diagnoses, which have all proven to be misdiagnoses. If you are the one to correctly diagnose us with a rare disease, please consider that I will be extremely confused and frightened by this disease I cannot pronounce. I will have no idea what I am dealing with.
Please consider, when you tell me there is no treatment for the disease I cannot pronounce, that I will go home and learn everything about this disease that is hurting my child. I will study biology. I will study anatomy. I will study genetics. I will be furiously researching this disease. I will take copious notes and even make charts that I hope you will use. I will stretch my brain to its limits and beyond to understand this disease. I am a student of my child’s disease.
If you correctly diagnosis us, please consider how hard it is to not have a sufficient treatment for my child’s disease. We grow up believing there are treatments for us when we get sick. It’s supposed to be a given, but not with rare diseases. Most of your patients probably have an approved treatment. We likely won’t. Later, I will find out that no one is looking for a treatment for my child’s disease. Try to consider, I will be crushed.
We will likely be in your office too often. We will likely be in many other doctor’s offices too often, so please consider that I am learning from these other doctors. I have the wisdom of many, in all areas of medicine. One day all of my own research and the many doctors I learned from leave me an “expert.” I say, “leave me an expert” because not a single one of us wants to be an expert in our child’s disease, it was left to us.
Please consider these things, because when I walk into your office I consider how hard you worked to become a doctor. I consider the long hours and dedication. I really do. Please consider making me part of the team.