Raise your hand if you have ever disagreed with a doctor?
Maybe I should ask how many doctors have you not disagreed with?
How many doctors are happy when you disagree with them?
It can be hard, especially for those us who don’t like conflict, to speak up and disagree with our doctors but let’s talk about why it is so important.
Ideally, our relationship with our doctor is a partnership where we work together toward the same goal but even partners disagree. Disagreements may occur on the goal, testing, diagnosis, or which treatment to be used.
The best partnerships build off the strengths of each of the partners. In this case, you are the expert on your body - what you experience, how it reacts, and your goals. Your doctor is an expert on medicine (in general) - their understanding of the disease, diagnosis, and treatment.
So, as the controlling partner in this partnership, it is critical that you speak up when there are things that you disagree with.
The partnership we have with our doctors is anything but equal in terms of the skin in the game. For even the most dedicated doctor, our partnership is just a part of their job but for you, a rare disease patient, it is your life, your health, and directly affects your quality of life.
Doctors bring their education and experience to the situation which is valuable but you are the one who has to live with the consequences of the decisions being made. You bring your experience and intuition into what could be going on or what treatment will work best for your body.
So, as the one with the real skin the game, speak up, and share what your thoughts, ideas, and intuition on what will work best for you.
The partnership required for a rare disease patient is unique. Rare diseases are not well known and with 7000 rare diseases, it is understandable that all doctors can’t know about all of them. And as you know, most rare diseases do not even have agreed-upon testing or treatments.
All of that makes it challenging for your doctor to be on top of the latest research and recommendations. You, as a rare disease patient are highly motivated to research, network, and find things that are going to help with your specific rare disease(s) and the life you lead.
In a traditional doctor-patient partnership, the doctor brings and shares information about the patient’s disease. In a rare disease patient-doctor partnership, that is flipped so you, the rare disease patient, bring some, if not all, of the information and research about your rare disease(s).
So, as the most highly motivated partner who is motivated to keep up with your rare disease(s), it is critical that you speak up and share the information that you have so you can together make the best decisions for your care.
As you have seen, it is critically important for you to speak up and disagree with your doctor.
Is your doctor OK with you speaking up and disagreeing with them?
The key is to do it in a way where you can work with the doctor to come to an acceptable solution for both of you...or if that is not possible, it might be time for you to find a new doctor to partner with.