Seeing new doctors is always interesting, especially when they have a screening questionnaire for new patients. The appointment usually starts with the doctors looking at this form and saying things like “you have night sweats, palpitations, headaches, muscle aches and fevers regularly?” The tone is often a combination of skeptical, surprised and confused. I tell them I have POTS, spelling out what the letters mean and then gauge if they have any idea what I am talking about. With few exceptions, they have never heard of POTS. This is always the most important part of the interaction because it is up to you to explain your illness to them. The trick here is to use as many big medical words as possible so that they will accept that you know and understand what you are talking about. Another thing that may work is to carry a letter written by the specialist who diagnosed you. Having an M.D. behind the name carries a lot of weight. Some doctors will still not accept what you have said and I have certainly had doctors act like POTS is just a name that was given to symptoms of anxiety by some doctor to placate me.
Depending on what kind of doctor I am seeing, this can either be significant or not. If it is a specialist you are seeing for a seemingly isolated problem, it might not be as important as if it is a primary care provider. If a new doctor who doesn’t understand POTS gives you a recommendation, simply run it by another doctor who is familiar with POTS in order to make sure it won’t exacerbate your symptoms. For a primary care doctor who will be taking over care, dismissing POTS is probably a deal breaker. You are likely going to be seeing a lot of them so this relationship is important. One of the best things I ever did was have a frank conversation with my primary care doctor about his thoughts on my symptoms. I explained to him that I had a real physical illness and that I could sense he was skeptical. I told him that was fine and within his rights, but that I would not continue to see him if that were the case. He has been an excellent doctor ever since.