We have been contacted by quite a few people to the run up to Christmas and the same phrase has come up 3 times.... "They just don't get it!" One was about their boss and work colleagues, another was about teachers and fellow class mates and the other was about direct family.
I found it was difficult to explain to some of our family about Wegeners Granulomatosis, when John was first diagnosed and felt very alone when John was so very ill. Two of our children lived at home and were part of everyday life living with WG but two were not and had great difficulty understanding. I also don't think the extended family fully understand even to this day.
I am saddened to say sometimes, people "just don't get it" if they don't have vasculitis or live with someone with vasculitis. John Mills has produced some leaflets himself called "Understanding Vasculitis" they are written by John in layman's language with a diagram for people to give to other people to help them understand Vasculitis. If anyone would like some copies to share please message us.