I never experienced that. When I was diagnosed by a doc in internal medicine in 1987, I said okay what now? He didn't give me any direction, just said watch your kidneys. When I landed up in the hospital with kidney problems in 1990, I gained 40 pounds of water, protein and blood was present in the urine as well as blood work all pointed towards kidneys. The doctors were really concerned and sent me for a pile of tests. I was in the hospital for 30 days. They did a biopsy of the kidney and it came back as minimal change disease. The doctors said it was not due to SD. At that time they diagnosed me with SD again. A councelor came in and wanted to talk to me about it, and I told her I was not concerned with it. I went on a course of treatment of prednisone 125 mg every 2 days and that did not put my kidneys in remission. I went to another kidney specialist and she used 30 mg of prednisone and a chemo therapy drug. After 6 weeks, I was in remission.
Then I was refered to a rheumatologist. He was the head of the department and gave me to one of his new doctors in training. She was a doll, very compassionate and very pretty. She sent me for a bunch of tests and diagnosed me with diffuse SD. She said for some people the course of the disease is a long one and I could die of old age before the disease got me. My symptoms at that time was Raynauds, acid reflux, swollen fingers, with lots of ulcers, tight skin on my arms and back.
Then she left to start her own practice in another city. That when I decided I didn't want to see anymore doctors and worry myself. So I went for years not seeing a rheumatologist.
It was not until this year that after a number of alarming symptoms I accepted that I may die early from SD. It still does not bother me that much, I just never fit into the stages of learning I had a serious disease.
I am not a mocho man, thats just my story.