It is just so frustrating. I feel like everywhere I turn im afraid people will make fun of me if they find out that I have hydrocephalus and I do not want to be considered the broken twin.:(

I definitely know the feeling of not wanting to get hurt. Because my Hydrocephalus was used against me, more than once.

Following my divorce, I met a woman on a Christian dating site. When she found out about my height(5'6" due to hydrocephalus affecting the pituitary gland and the short height of my mother's family), she(5'11") said she wasn't interested.

Another woman on the same website, said she couldn't cope with my health(ex-wife deja vu).

I know that feeling all too well.

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.

Hi KL
 

People can be jerks, no question about it. You have to put yourself above all that are realize you are OK just like you are. I have no hair at all, and got teased most of my life because I wear a scarf instead of a wig. I ignor those people. Keep yourself focused on the good that you are. We can't help people who are cruel, but we can indeed ignor them. Stay with the friends you do have, that accept you just as is. Stay positive, that your life can turn out just fine. Shoot for any dream that you want. You can't shoot for the stars until you take off at ground level. No matter what our handicaps or conditions, we can be just fine. Hang with those who have positive outlooks. Scars help make us who we are. Celebrate them. You are still here and doing OK. We all get scarred up during our lives, sometimes they can make you a better person too. I wish you all the best. ginnie

I feel the same exact way.

Recently, An online friend of mine, that I have known for ten years, accused me of using my health problems, as a crutch. Not too soon after she made that comment, she too was diagnosed with Hydrocephalus n' Epilepsy. I just hope she never needs a shunt revision. Because, She n' her fiance certainly don't think of it as a possibility.