Do you have problems explaining to people around you what "Vasculitis" is? Family, friends or work colleagues?

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.

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  • I do have trouble explaining this, I found the 'Spoon Theory' on the 'Butyou dontlooksick' website was really good for explaining the fatigue part of my condition especially at work and I use Johns post about reserve batteries, or lack of them aswell.

  • I stopped telling people I have "Wegener's Granulomatosis" ages ago because I got fed up with the strange looks they'd give me...but to be honest, "Vasculitis" provokes much the same reaction.

    The worst part of it all is the strange contradiction whereby people know you have an incurable disease, then they see you and you appear to be bursting with good health.

  • I have had CSS for 16yrs and still my family and friends do not understand that this is an incurable condition. I 'look well' so they assume I am. I've just had DLA stopped yet I can't get life insurance. People just do not understand how debilitating it is.

  • Have you appealed. I can send you some info to help if you would like some. Or you can go to benefitsandwork.co.uk it costs just under £20 a year to join but is very helpful. Vasculitis-uk are also members so I could look for you to see what is available I can pass on. I think CSS is especially difficult to explain to people. take care Susan

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