I also have hydrocephalus my husband things i should control my moods and the hydro is no big thing and will just go away not much I can do with his out support im alone with it.

You are so lucky to have a wonderful man married 24 years hes thinks this no big thing I get scared when have a promblem HUGS To YOU BOTH

It is actually women with hydrocephalus and life with hydrocephalus. There is this guy named ron who will give you friend suggestions from people in your area as well. It is fascinating and everyone is so nice and understanding.

The 'Women With Hydrocephalus' group is restricted. But I do know who Ron Patrick Kelleher is.

I did go to a hydrocephalus support group over the summer, with my father. He had largely left knowledge of my health up to my mother for my entire life. To the point that, if I did start to have a seizure, or start vomiting, he would probably call my mother. He stayed away from it. The group meeting we went to, was mostly parents with, kids no older than 15, that had hydrocephalus. There weren't any adults with hydrocephalus in attendance, other than me.

This thread looks like it hasn't been posted on in a while but I just joined, so I've been poking around the forums, and reading stuff I've wanted to comment on. A lot of stuff that has been posted really resonates with me. I posted in my intro post about not knowing any people of "average" intelligence because most of the other people I know also have physical or mental challenges to go along with their hydro.
I have some mild physical challenges which have precluded me from doing things like sports, so I can't really relate to that group of people. I also never really feel like I have much in common with people my own age, so I don't really hang out with many of them, either.

I have acquaintances from work, but don't really hang out outside of work much. I think my main issue seems to be that I can't feel like I can open up to people to let them know about the struggles I've been through, particularly all the challenges I faced as a child. I never like to feel like I'm being judged, but I know everyone does it whether they are aware of it or not.

Katie, I saw a post directing me to this board for pseudotumor cerebri, but I think hydro is different actually than what I have.

I wanted to reply to you though because I spent a lot of time single with few friends for other reasons. I too felt that I couldn't tell people what my youth had been like. I met somebody new who I confided in eventually who told me he didn't understand why I was so afraid because anyone who really got to know me would like me. The friendship ultimately didn't work out, but I carried that with me and found it to be true. Not everyone you open up to will be a good person or good friend, but you create closeness with people by sharing bad times as well as good.

I've found that if I stick with fun and funny things at first, I can gauge who might be interested in learning more by sharing just a minor frustration or difficulty. If the person seems genuinely interested in the conversation, you can slowly over time share more and more to see where the comfort level is at. I have gone from being somebody with few friends, to having quite a few friends of varying degrees of closeness. Not everyone will be somebody who wants to hear all about your struggles with hydro, but some will. And some who don't can still be friends that meet other needs in your life.