• arielaaviva

EDS Conference: Patient/physician relationships


Every time I have to see a doctor, I get a wave of 1,000 emotions. I'm nervous they won't give me enough time to explain myself, anxious they're going to dismiss me as crazy, worried that the exertion from the visit will knock me out for the next few days, excited that they might have answers (or at least strategies) for me... and I also carry the sense of hopelessness and frustration from every appointment in my past.


I finally have a PCP who believes me, trusts my instincts and suggestions, and knows enough about the trifecta to not make huge mistakes. This did not happen by chance. I asked around to find someone who was inquisitive and kind, and then I prepared like crazy for my first few appointments. Want doctors to know how smart you are? Learn the lingo and do the research to show you know your stuff. Want them to believe your story? Bring an advocate to appointments and show them the symptoms you've been tracking for over a month. Want them to know how hard you work to be well? Bring a list of the strategies you've tried and how each one went.


Shani Weber gave two talks that I found helpful in navigating relationships with doctors. She understands the patients' perspectives but also the physicians'. Seeing a new doctor can feel like putting your life in the hands of someone you've never met (and probably already distrust), but these talks helped me see some concrete steps you can take to regain some control.


How to Have Productive Doctors Appointments

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Build Your Medical Team

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