I feel your pain. I have rare disorders which affect my executive functioning, so simple tasks are insurmountable at times for me while my intellectual ability is unaffected and likely above average. Which leads to two things: I rarely get help making appointments and what to do and just “do it yourself” without guidance and get kicked out. And the other one is that I could not be possibly correct interpreting the test results, because how could I have the ability without being an official researcher to research things. I am deeply frustrated, the more tests I run and see my thesis is correct, the more push back by doctors it is more likely to have randomly a dozen conditions instead of a single one uniting them. Welcome to Ehlers Danlos.