Hydrocephalus n' Loneliness
 

I have congenital hydrocephalus. I was married for 8.5yrs. My (ex)wife left me at 4.75yrs. into the marriage. A year after my (ex)wife left, I found out that my (ex)wife had wanted my health problems to 'just go away'. That ignorant attitude is why my (ex)wife freaked when I had a seizure. So I divorced her after 8.5yrs.. Four years after that, my long held suspicion about her health was confirmed, so I was vindicated. I could no longer be looked at as the sole problem in the marriage.

I was engaged to another woman after my marriage. But when I held her accountable for her behavior(Bi-Polar II), she was quick to 'diagnose' me.

Am I due to die alone because people can't cope with my health?:(

hello!I just turned 31yr1w,old:).I've got congenital hydrocephalus and epilepsy and I've had the same loneliness issues.People are either don't know how to deal with "us"or give up after a while.I've never been married nor I want by choice.My friends,true friends have accepted it,of course.
But I still feel really lonely.And no,ur not going to die alone.you must be having at least one good friend who doesn't see a "sick"man.....right?

I am so with you guys on this one. People are very uncomfortable around people who have chronic conditions, I also get constant comments from people who believe I am a hypochondriach, just irritates me. But I had someone who I was with who he was as well freaked out by the amount of time I was ill as opposed to well. It's tough.

Hydrocephalus n' Loneliness
 

I was widowed in 2002(my DH had a severe seizure disorder and due to a ER Dr's neglect he passes away.The coroner who did the autopsy said had the Dr.paid attention to ME my DH wouldn't' have died.

Well, 4 yrs later,I met a man, and I told this man on the first date about my medical problems ( I have hydrocephalus & severe head pain & vomiting issues) and it didn't make one bit of difference to him. He continued to date me and 6 months later we were married. Since then I have been hospitalized several times, and none of this made a difference either ! Either your spouse or girl/boy friend loves you for who you are, or they aren't worth worrying about. MOVE ON !

My option here is that you just didn't find the right person for you. Take time, and know that there is someone out there for you. Remember too, that you don't have to( and never should ) settle for 2nd best. Sure you have a chronic illness, but no one is perfect !

Learn to live life at its fullest. If you view your life like a glass of water that is HALF EMPTY, then you need to rethink your life until that glass is HALF FULL....
Try to do different things, volunteer, etc. Go to the library, and so on. You never know where you might meet the no#1 PERSON out there for you !

Good Luck !
( by the way, I am 56 yrs old ):)

I am sorry I haven't replied in several months. My hydro is congenital, due to a brain aneurysm. But the Epilepsy is due to all the surgery I had when I was a youngster(44 now, six surgeries by 9yrs.-old). I don't have any 'true' face-to-face friends. While I do ride my racing bike and do have friends at the bike shop I usually get my bike serviced at, their friendship is 'marginal'. Because I don't go out to bars, or parties AND, they don't know the extent of my health. While my health is seemingly stable, I constantly worry about the 'what if', of 911 being idiots, on top of other citizens just not caring at all to the point that I could die prematurely due to ignorance.

People wonder why we don't get out and have fun. Because when we try to have fun, it is subjective. Courtesy of ignorance.

The problem with 'never knowing who you might meet' is, while potentially positive, my experience has always ended up negative.

My (ex)fiancee is worse off than my (ex)wife. My (ex)fiancee was abused as child, not just by her step-father emotionally, physically, psychologically, and sexually. She was abused by her own mother's denial about it happening in the first place. Her father had tried to get her out of the situation but her mother would not let her.

Despite all that, 'when the chips were down' concerning my hydrocephalus and epilepsy, she came through in a heartbeat.

The absolute flipside was, she 'diagnosed' me thirteen(I remember the number and name because of how much it hurt to hear it) times, even though she was not a clinician. When I finally told her to stop(after four years together), she ran off to a battered women's shelter saying I scared her.

I was wondering the same thing. I am 22 years old and have never even been in a relationship simply because I feel as if no one will truly accept me for who I really am. I have written my feelings in a notebook and keep them to myself because I feel as if anyone finds it and reads it that they will either send me to a therapist for depression or will put me away in an asylum because they will think I am hurting myself (not the case because I have struggled to live this far that I will never throw it away). You will find someone out there. I had joined a support group on facebook and let me tell you it is helping me feel better and have been writing in that notebook less and less because now I know that even though no one in my area has hydrocephalus I no longer feel alone. You should give it a try. Keep us posted on how you are feeling and stay strong.

What is the name of the support group on Facebook.

I have been engaged since 2007, but the reason for my original post has to do with, feet.

I do ride my bike a lot. But recently, I have been so down, that I couldn't do much of anything.

I know how you fell
 

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

Facebook
 

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.