Hydrocephalus and being selfconscious
 

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!

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

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!

Invisible scars
 

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:hug:

Thanks guys and defreeze congrats on your baby girl. I guess ive been dealing with ignorant people for so long that I keep trying to find a way out of the fear of hydro but I just don't know where to look. Like whenever I try and go for help someone just attacks me instead that it is hard to find hope that the feelings will go away. Like every road i turn to is just a dead end. It has gotten bad to the point where I have looked at more info on hydro and it is like wow I can be a burden on someone. People have made me feel like having hydro is like being married to someone who already ahs a kid. It is extra baggage that no one else wants. I know it sounds silly but idk where the right help is.

I have had to deal with the questions about my scars too and I know it can be hard. I deal with it usually by making jokes about them. My friends and I once did a 'join the dots' game with the scars on my stomach from all the revisions I have had, and believe me, there are many.
The easiest way to deal with everything is to remember that the scars and the hydrocephalus are who you are and nobody can change that. If people want to judge you because of it then they are the ones with the problem, not you.

While I have never been teased about having Hydrocephalus, I do feel self-conscious about it.

The first girl I ever actually dated was not the summer right before I started my senior year of high school. I had so much trouble in school with grades and kids teasing me, just like every kid gets' teased, that I ended up not graduating until I was 20yrs.-old. The girl I dated between my junior and senior year, turned out to be 15yrs.-old and using me until her 'real' boyfriend was released from the county lockup. When she told me she wanted to breakup, she had a friend of hers call me at 2a.m. waking my father up. Her friend told me about the 'real' boyfriend having been released from the county lockup that night. I told her friend I wouldn't believe it until I heard it from my 'girlfriend'. At first she refused to tell me. I kept persisting, causing her to cry when she verbally verified it in the background. I don't know if it could be considered that I got sweet revenge on her but, I happen to run into her mother five years later and we had a nice chat. Her mother told me that, my ex-'girlfriend had dropped out of school, within months of us dating.

I met my future(now ex)wife the next year. We were 'unofficially' engaged for five years. During the engagement, she cheated on me and, I knew there was something just not mentally right with her, but I couldn't put my finger on it. I forgave her for cheating on me. During our eight-year marriage, despite her biological ability to bear children it always felt somehow(back then), that I was married to a child instead of a woman.:rolleyes: When I had a Gran-Mal seizure(I have Epilepsy that resulted from the surgeries for the aneurysm and Hydrocephalus), despite all the info I had given her on my health, she just freaked and stared at me like a zombie.

When she left me at 4.75yrs. into the marriage, I told her at the six month point of the separation that I could legally file for divorce if I wanted to.:( She begged me not to, so I relented.:rolleyes: The next year she told me that she had always wished that, my disabilities would 'just go away'.:mad: To me that was extremely ignorant and, it was then that I made the definite decision to divorce her.:mad: I didn't divorce her for another two years due to money. When I did, my parents along with her mother n' maternal grandparents were at the courthouse.:rolleyes: When it was finalized, my ex-wife reacted by crying hysterically and going around suddenly hugging her mother, my mother and my step-mother.:rolleyes:

The answer to her obviously odd behavior was finally answered four years after the divorce:mad: when my ex-wife was finally diagnosed as being disabled. I don't know what the actual diagnosis is, but my mother n' step-mother have always felt my ex-wife was mentally retarded.:rolleyes: I personally didn't(and still don't) feel that description accurately fit my ex-wife's behavior.:rolleyes: But she definitely(and finally) had admitted to being disabled.:mad: Her denial was perpetuated by her parents, who I had revered for years.:mad:

Now I am in a relationship that has lasted four years.:) My girlfriend and her parents accept me without reservation.:) But why did it take practically thirty years for a woman to accept me.:(

lcms0516 I really dont know why it took that long for that to happen. I wish I could give yuo an answer. It is very frustrating but I am happy that someone accepted you for who you are. I just dont want to end up feeling like this forever because if I do then I will never get anywhere. I don't know how to break out of it. I just don't want to get hurt. People tell me to ignore the people who say things like that but how can I tell which people won't use it against me and which ones will.

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.

Hello Icms
 

Glad to meet you through NT. Just thought to tell you, that sometimes people do accuse disabled folks of using that as a crutch. You know as well as I do that usually isn't the case at all. Most people really have and struggle with those issues we present here. Just pray for that person, and hope her own health problems can be resolved. I hope you are OK, and that your own medical issues have some resolution too. Have a good rest of the day. ginnie:)

Ginnie, You are so right about being accused of using it as a crutch, and them not understanding the struggles. She is on an anti-convulsant like me, for Epilepsy, and like me has Hydrocephalus. She is bursting with confidence that she can handle anything sent her way. While I admire that. She has also used it against me. She did apologize for that.

My medical issues did flare up Super Bowl Weekend of 2011. When I had a grand-mal seizure. That was the most recent, after 2005. But that was due to exposure from the fumes of resetting the heating tank.