Don't Allow Yourself to Be Dismissed
If you feel your doctor dismisses your concerns at every appointment, it is defiantly time to seek another physician. This is a relationship you should be able to count on.
If a new symptom arises and you tell your doctor, it should be addressed or they should be able to explain why it isn’t something that can be managed. You should be given options and answers, or at the very least a reason why your symptom is being pushed aside.
Take hair loss, for example; most doctors are not concerned with it and cannot do much about it. However, when you ask about it they should know that lupus can cause this, and even the medication some of us are prescribed for lupus can contribute to it. Essentially, the issue should be acknowledged even if the doctor cannot treat it or prevent it.
Not All Doctors Know Enough About Lupus to Treat You
It is my feeling that most doctors, unless they have encountered lupus many, many times, do not know all of its little nuances and the things it can do. They seem to rely on the textbook explanation and a checklist you must have and conform to.
Perhaps I am wrong, but that has been my experience. Seek a doctor that has experience with lupus, meaning a rheumatologist who specializes in lupus or the bulk of his patients battle it.
This way you have someone who sees the myriad of issues this disease can cause, not all of which are in the textbooks. You want someone who realizes lupus can be much bigger than a checklist.
Finally, set the bar high and require answers to your questions. Some doctors are not afraid to say they do not have all the answers.
One of the best things you can do for yourself is be your own advocate. Ask yourself if your doctor hears your concerns, answers your questions and/or offered explanations, considered further testing, or suggested other treatment options. Don’t settle for treatment that just gets you in and out of the office as quickly as possible and ignores your questions and concerns.
Searching for the Right Rheumatologist
Finding the right doctor is an amazing blessing. Here are a few things I have found important when searching:
- Experience with lupus: A rheumatologist who specializes in lupus or the bulk of whose patients battle lupus can see the myriad of issues this disease can cause, not all of which are in the text books. You want someone who realizes lupus can be much bigger than a checklist.
- Possesses empathy: Not a classic trait of many busy doctors these days, but you want someone who feels some compassion for the pain that lupus causes and will work with you to find ways to manage it.
- Will take the time to listen: Having a doctor that takes the time to hear you, asks questions and waits to get the full answer and considers what you say and feel as an important piece to the puzzle is vital.
- Seeks answers: Some doctors are not afraid to say they do not have all the answers. I have had one who was not bashful about saying that he needed to speak with some colleagues for advice and hopefully come up with some answers and possible solutions. I respect this more than anyone who thinks they know it all.
If you do not feel your doctor is giving you the kind of lupus care you need or deserve, it may be time to continue your search. Asking for referrals from others with lupus is often a great place to start.