Thank you for writing this article. So aptly put.
I've been sick with this for fourteen years. Daily nausea, vertigo, exhaustion, pain. (Folks, it isn't just fatigue) Can't drive, homebound for over ten years now. Sometimes so weak I feel like it is just an effort to breathe, sometimes it is an effort to stand and brush my teeth.
I totally relate to what you say, most of all to the loss of trust in medical professionals. Well, there's just a basic loss of trust in life. It is like being a bettle knocked on its back and forgotten as the tide of life rushes by.
The people who have pulled away from me because I am not as much fun now, I understand why but it still hurts. I lost all of my 30's, the most productive/growth intensive part of life for most people.