I am interrupting my posts on nerdily educational things to talk about something that is crucial for folks who have chronic illnesses: doctors. Medical professionals can make a huge impact on the trajectory of your disease and your prognosis. In my experience, if you like your doctor, you will comply more readily with their orders. Or if you think they are competent. This is not the case with all doctors, even well-respected doctors at well-respected clinics. They can sometimes think they're so good and always right it can be difficult for patients to get a word in edgewise.
I am very very fortunate among those in the PIDD community. I have a great team of doctors that work together for my health. They listen to me and to one another. The ENT calls the immuno, the immuno talks to the rheumatologist, the GI, and so on, and they all send results to my primary doctor. This, unfortunately, is a dream for most patients.
Complicated patients need a sophisticated team that can communicate. If this team doesn't work together, there's a chance something will be missed or major complications could arise. It's a very scary prospect. It's painful to see friends know they need help and not be able to find it. It's scary that they know more about what to do than their doctors and the doctors won't listen or decide not to intervene. It's a little shocking how close-minded some physicians are and how much hubris they can posses. Inevitably, the chronically-ill patient will know more about their body than you do, doctor, so take a moment to listen to them. It may save their life.
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