Knowing she cared minimized my anger at the clumsiness of one nurse who kept bumping into my bed. Other hospital staff personnel are important if they give the feeling of concern and empathy. You are the most important person in the medical management of your VHL treatment for a variety of reasons. Nobody else can tell you how you are feeling. For example, I was the only person who could describe the symptoms of back pain and throbbing in my back invoked by even minimal exercise.
Accurate descriptions can help the doctor pinpoint the source.
There are many unresolved feelings when you learn you have VHL and what it could mean to you. You need to be your own advocate and take responsibility for learning about the disease and how you can help yourself. I had to be responsible for asking any questions I had and not be afraid of asking what seemed like dumb questions. The only dumb question is the question you don't ask. Because you are involved with other family members, you need to be aware and deal with their emotional feelings.