Hi Bonnie and a very warm welcome to the group. What a rough time you are having at the moment,
so I'm so glad you joined. I know it makes it more frustrating and upsetting when your family and friends don't understand what this disease it, so we have put together a booklet that hopefully will help you Informing People About Your IIH
and we also have this helpful information A Way To Explain IIH To A Non Sufferer
As Julie said you can also get them to visit the IH Research Foundations website www.ihrfoundation.org as they also have lots of helpful information about IIH.
Hopefully when they learn all about IIH and what this disease entails, they wil have a greater understanding of what you are living with. The more they understand the better they can support you, and the easier it will be for you to cope with.
You aren't alone, we are all here to support you and help you, even if you're having a much needed rant.