There are two possible paths they follow. One is to withdraw, run away. The other is to become more aggressive, blame the doctor. These are normal reactions to any trauma. One of the things we need to do is to review with all our VHL family members the normal reaction to trauma.
Stress is a normal reaction.
One should not be criticized or blamed for withdrawing, but understood. A social service representative from the hospital, or a therapist who understands family reactions to health problems, should be brought in on a consultation. There are specialists who specialize in working with patients and families whose conditions are primarily physical health problems, not mental health. Behavioral health, or behavioral medicine. Centers of excellence like Johns Hopkins, Mayo Clinic, etc., would routinely have a behavioral medicine specialist as part of the team.