@A MyLupusTeam Member I agree that having lupus for over three decades has changed the way I communicate with my doctors. I have learned to address them accordingly since they each have different styles of "doctoring". On first visits, I always make sure to let them know that I am an informed patient - I do my research. If they use too much medical jargon I don't understand, I don't hesitate to get them to explain it in layman's terms. Also, always read not only test results but also their notes. A time or two I have had to tell a doctor that they reported something incorrectly and got them to change it. This is especially important for your disability records. Establishing a relationship with all of our doctors, nurses, front desk, and billing personnel goes a long way. Take care and have a lovely day.💜

Mentioned Users

A MyLupus...

Not at all! That Dr. may be an expert in their field, but I’m an expert with my own body. It became a lot easier to advocate for myself when I was able to see doctors in a different light. Their mistakes, their non-compassion, and their some of their arrogance. Seeing that empowered me and it light a fire in my soul. I became more than knowledgeable with all of the labs that the doctors were ordering. I also questioned why they weren’t ordering some that were concerning to me. It’s also very important that prior to your doctors appointment and I’m not talking about 10 to 15 minutes before they call you in, I’m talking about the night before intentionally sitting down and going through your labs, writing down questions, writing down your feelings about a certain lab value. It’s in our best interest to learn our own lab values and research our own disease so when you walk in that doctors office, you’re not intimidated nor caught off guard by their lack of sympathy or arrogance. Because you are already prepared and please do not be afraid to look for another rheumatologist. If you are feeling something in your soul, something is not sitting right with you about that doctor and that doctor is not answering your questions calming your concerns by all means it’s time for another doctor.

Yes I am learning to be more direct with my questions and to keep asking until my question is answered. I have found Drs go through a check off sheet almost like tech support does for a computer. They fail to see we are human. They see a blood test in the normal range and say the test was good. I look at changes in the actual number, like it was a low normal last time and now its 1 number from being to high and know something is going on. With lupus I research any test given and get copies of xrays reports and any test done. Then when I have the test repeated I can look back and see what has changed. Even though it is still in the normal range if there is a BIG difference in the numbers I know to ask more questions.

Another tip, Try and keep a list of medications you tried and didn't work and why. I have a neurologist that is constantly tweaking my meds. He tried a new medication I had already used that didn't work. Total waste of time. I should have recognized it, but there are so many. You would think it was in my record. Anyways, hope this helps 💗

I'd like to add, anytime you can request blood work ahead of the appointment (say 2/3 weeks). Then you can discuss most recent results with doctors instead of months later.