hi i have been having problems my whole life and have been treated just like you. i have an apt today with a cardiologist thats suppose to be an expert on POTS. monday i see a geneticists for hypermobility eds. one of the best things i have found is a local support group for eds and ask the people at the meeting who their drs are, that have helped them the most and i’m going to see these drs and are hoping they will help me too. waiting is the worse thing b/c you feel so crappy and just want to feel better. depression is part of this. watch dr diana’s video on depression it really helped me. others don’t understand how hard it is for us just to go to the dr , they can and have treated us so badly-my depression might be really bad tomorrow. i can feel it today just by going to a new dr and lying everything on the line and he could treat me like it’s all in my head. i hope today is a good day! best of luck to you!
Dab, you are so right! There is no way someone without this condition can understand the urgency of our suffering. I told my husband that I was worse about every 4 hours or so at one point, yet we can be treated just like a routine sore throat patient! The lack of validation of our suffering, the lack of help, and the lack of compassion is the “trifecta” for suicide ideation. I’d like to fast-track the learning curve for physicians, if possible. We must always hang on to hope, though. Some progress IS being made, and the internet has allowed patients to compare notes like no other time before in history. That will help us tremendously. Big hug…