Has anyone else ever felt very self conscious about having Hydrocephalus? Has anyone ever used it against you or hurt you mentally for having it that you feel like you have no hope in finding anyone who will accept you. As I am getting older I am feeling more and more self conscious about having hydrocephalus and the scars on my body because people ahve made fun of me for them in the past and I am finding it harder to accept it even though I have had it all my life. I have had people come up to me and ask what was up with the scars on my body and I explain it to them and then they laugh at me and keep laughing at me. Ive also ahd people come up to me and say things like you better stick with your sister all your life after your parents drop dead otherwise if your sister leaves you you will crash and burn and wind up in either a retirement hime or an insane asylum because you are not mentally stable enough and that because you have a shunt in your head you are the broken twin. These incidents have happened since my last revision 12 yaers ago and I find it hard to let it go and the last incident happened in april of this year. Anyone have any advice on how to get over this fear of being rejected or made fun of?

First of all, if you're around people that make those kinds of comments, stop hanging around those kinds of people. Secondly, I've had multiple revisions since the age of 9 and I'm 44, with my last being 9/2008. I put up with comments like that when I was maybe in grade school, but since then, they have stopped. You sound like you could be your own worst enemy here, and that, you're either exxagerating or even imagining most of those comments as a way to reinforce your own feelings of isolation. We all (hydros) have them. The best advice I can give you is to stop focusing on the negative aspects of your life, stop comparing yourself to your twin, get a new set of friends and acquaintances and learn to appreciate that about you which is good and unique. Do not use this disease as a crutch to become a victim. Get on with your life. Take charge!

I agree about not being around people that make those negative comments.

In terms getting friends, outright(as opposed to getting a new set of friends), I have always found it hard. Because once they see my head and/or, hear about my hydrocephalus, people will usually ignore me, like I am somehow contagious and/or infectious without caring to hear why I have it, and what it isn't.

Yea it is very hard which is why I try to keep it hidden from everyone because I feel like as if I am a freak because if they do know thats all they see in me. They dont focus on anything else. It is very frustrating and the older I get the more it bothers me because I hate the way our society views topics even though there is nothing I can do. Like I learned in Western Civilization that in the Middle ages people with disabilities were looked down on as if their life was not important and were killed or left behind as children/babies. I know that we have laws that prevent that but in reality people still view people as freaks if you have even the smallest thing wrong with you. They do not want to understand the reasoning for it but find it easier to harpoon negative things to you or behind your back.

Then, If disability happens after the two people have already started a relationship, people will avoid your health problems like the plague. My (ex)wife knew about my health problems, before we got married. But when I needed her, she looked at me like I was freak.

That was a low blow right there what she did. That's horrible. It's disgusting. I'm so sorry that happened to you. I really can't find the right words to express the utter disgust I feel. I do not want people to avoid me like the plague because that is what I dealt with all my life starting from kindergarden so it is very hard to find people who will accept me. I just want to get rid of these fears because I feel as if I am not in control anymore but my fears took over.

And if a stranger comes up to you and asks, "What are those scars?" tell them 'none of your ** business"

I was never comparing myself to my sister. Someone else brought that up on their own which completely suprised me. Those people who have said things like that about me behind my back I have long stopped talking to but the feelings are still there because of the fear that it may happen again.

I know and I don't mean to be caustic. Just don't fear that. All your dreams are still possible and anything you want you can have. Your hydro will not hold you back. People can be jerks. Hydro or not, we all have to be our own best advocates. After my last revision, which was 4 years ago at age 42, I closed my private practice, get married and had a kid. I sometimes feel it was a product of that revision bec when it was over, I had this incredible sense of newness my life, like I had been asleep for years, like those patients in Awakenings. It was weird. I remembered laying in that hospital bed and thinking, "I gotta make some changes." One month later, I had a new, much less stressful job. 5 months later I was married and 13 months later we had a beautiful baby girl. These types of changes are possible for everyone, especially you!

What people have said to you about your scars is "ignorant" I am deaf in one ear and believe it or not I have been told by ignorant individuals "You don't look deaf" How does one look deaf? Our scars and the rough road we have traveled are what makes us who we are today, the fact that you are here makes you very special! But it can be hard to forgive ignorance