Hi Barbara!
Yes, the appointment was frustrating indeed. It helps to know that it isn’t just my same old bad luck with people and is unfortunately a shared and common experience among EDSers and other chronically ill/zebra folks. It breaks my heart to think of all the people out there who desperately want help but get slapped down. It is beyond ridiculous that there are not more safeguards in place to act as patient advocates. A doctor is just a person with all of the flaws that that entails. Some will be great while others are not. A doctor’s word does not change reality to suit their views. A doctor can be wrong. A doctor might be well-intentioned but lacking information. A doctor can be arrogant and have a god complex. They can be so many things. Yet what options are left for patients? To simply sit there and not ask any questions? No thank you. Not for me. But all of us can be the pioneers. We can be the ones who fight in order to make it easier for the people who come after us. No one should be made to suffer alone. I will not accept that as long as I have a breath left in my zebra body.