Listen - I know dealing with doctors for rare diseases can be awful.
Medical trauma is real...I haven’t met a single rare disease patient who hasn’t
Sadly, we have to kiss a lot of frogs to find our prince (so to speak).
But, when we demonize doctors, we are the ones who are most hurt by it.
YOU have the power and the right to choose your medical care and who you work with. It’s your body, your health, and your life!
You can’t change how each doctor treats you but you can change how you respond to it so you are no longer a victim.
Don’t let one person, who you don’t agree with, have the power to upset you and deny you the care you need.
Protect yourself by saying “Not the right doctor...next?”
Doctors say a lot of crappy things to rare disease patients. Sometimes, their behavior goes beyond not being the right doctor to abuse, mistreatment, or malpractice.
You are less likely to be able to tell the difference in the types of behaviors and report behavior that crosses that line when you demonize doctors.
Knowing that you can and will report a doctor during these times empowers you to be strategic in getting out of the situation and moving forward.
Empower yourself by reporting mistreatment and abuse from doctors.
You are looking for health care and support from a doctor and medical team built on trust, respect, understanding, and empathy.
When you demonize doctors, you are making it hard for you to create strong relationships with the rest of your doctors.
You can disagree with a doctor while maintaining trust and respect by understanding that not all doctors are right for you.
End your relationship with the wrong doctor without anger or burning any bridges by thanking them for their opinion (it is, after all, only their opinion) and moving on.
You have and will likely encounter situations that are upsetting and doctors who should not be treating your rare disease.
You may have experienced medical trauma and mistreatment - it is very real.
But, you can step into your power and decide whether it serves you to demonize the doctors.
It hurts us more than them <3