Changing Healthcare Providers
Last updated: April 2022
It seems like that is all I know, CHANGE.
Over a period of a few months, I have had to change several of my healthcare specialists. For me, it takes time to get to the point of being comfortable with telling someone intimate details of what you go through physically, and this can take considerable trust.
The challenges of being an introvert
If you know me, then you know I'm truly an introvert. An introvert is someone who is quiet, calm, and reserved. The more comfortable I get, the more I will express myself. Warming up to people is something I really don’t do when I first meet someone.
I usually pay attention to the energy before anything else. So, when I first encounter a new doctor that I may have, I am paying attention to the energy and feelings before listening to what is said. The first meeting is usually about my history and the second appointment will be about the battery of tests that were run and the results. On most occasions, I must start from the beginning of my experiences, which includes my family history and the information that was told to me by other doctors.
I recently found out, that this information is not dictated accurately in some instances.
For example, on my first visit to a new hematologist, I went over what I was told verbally by my past hematologist, who said: “I am sorry you are suffering and you are in a unique category, I think your sickle cell condition is what is causing your back pain”. My current hematologist had indicated in my records that "He believes his pain is from the sickle cell," I'm paraphrasing. I think this statement gives a different representation of myself, my situation, and my complaints.
My back pain is coming from both sides of my low back muscles in the area of the gluteus medius.
I did have a multilevel lumbar spinal fusion in 2013 and 2 neurosurgeons later, they would not attribute the surgery to my current pain but thought it was muscular in nature. This usually takes me to a place I don’t like to visit, because I go back over the emotions of what it feels like to be ignored and misinterpreted.
It feels at times that my concerns are not BIG ENOUGH to take seriously, and I get the notion that the goalpost is being moved. On the other hand, I also feel that one of these specialists will connect the dots someday, find the underlying issue(s), and correct the problem or problems.
I have been trying to find that individual since 2010. I find it a slow process trying to update another physician on where I am in my life's medical history. Starting over shouldn’t be a burden of despair but another opportunity to receive the proper relief.
Of course, communication is key in any realm of dealing with human beings, I would think that it is in my best interest to say what I think, feel, and understand, but I have no control over how what I say will be interpreted. I would like to know how you have dealt with changing your care provider or providers?
Are you interested in connecting with other sickle cell warriors?