The hardest part for me was building up hope before each appointment thinking “this is the time I’m going to find answers or get a treatment plan.” Then the provider would spend their 15 minutes with me and I often left feeling that I wasn’t really listened to and that nothing had really changed which was super demoralizing.
For me it would be the lack of control over my future. I would be thinking about the worst case scenario and how to deal with it and how it would impact my life. You basically have to lay there and wait for someone to tell you how your future is going to be.
Frustration that your unique concerns aren't being heard or your questions aren't being fully answered. I've seen it. Physicians might not always have as much time as they'd like to spend with a patient and/or they have seen the issue many times and can immediately identify it with certainty (which the patient might not be aware of).