This is a story of our familys' survival through the trials of living with and diagnosing a "rare" disease, one that not many doctors believe exists in the general population. It is a story of fear and mistrust and excruciating sadness for the family.
Mostly mistrust of doctors and alot of the medical community. When you live with a silent illness (as in no one else seems to see it) it sometimes feels like no one really believes that the illness exists - could all be in the head, looking for attention, etc. After awhile one really begins to wonder who to trust and who will turn against them. Not a whole lot of fun.
I used to feel like I had a life outside of my family, or at least one that included hobbies and such. Now, I feel like if it doesn't pertain to Cushing's, I have no interest.