Privacy: When do you let people know about your child’s condition and to whom should you reveal it? This is a subject to which whole books have been devoted, and the opinions can differ widely based upon your personal thoughts and what type of culture you live. My aim here is just to give you some things to think about; questions you and your child should ask yourselves when broaching the subject of bladder exstrophy with others. First off, I think it is important to have a measured response to privacy. If you are too closed up and you don’t let people into your world, especially close friends, they will not be able to help when you might need it. If you are too open about your condition (or your child’s) then people don’t give it the proper respect and treat it as a joke or a minor inconvenience. Therein lies the challenge: walking that fine line between openness and privacy. Walking that line is tough, and children won’t know how to deal with it until they make some mistakes. So how do we try to minimize those mistakes? The first question I ask, is what do you gain or lose by sharing your secret with others? I think certain times it is imperative, in case something happens, that there is a person there who can help you or your child out. Other times, when you are talking to friends who you only see in social settings, they don’t need to know, as your condition shouldn’t affect them. There are three main groups of people who you should consider when thinking about telling others: Teachers or other authority figures; friends; and parents of friends. It is usually good to let teachers and school nurses know of bladder exstrophy when they might be put into a position where they need to help, such as when an accident occurs. I would avoid telling teachers or school authorities that have no or very little direct contact with your child (such as a mus ic teacher) as it serves no purpose. As you get older and you become more independent, no teachers need to know because you are able to manage your condition on your own. By the time I reached middle school, I could handle my own condition so I didn’t tell any of the authority figures at my school. Parents of friends are something I rarely dealt with as this was only important when I was a young child. My parents spoke to those other parents much like they did with teachers, on a need-to-know basis. My parents told the parents of my best friends as I spent a lot of time over at their houses and had sleepovers and took trips together. It was always helpful that my parents had those conversations away from me and largely kept me out of it. That way I didn’t feel uncomfortable, but if anything happened, I was always okay. Friends are the hardest to deal with. When I was very young, I didn’t let others know. As I grew, I began to understand my condition and what it meant. Only then, did I begin to open up with friends. It is important that children be able to understand their condition and how they are different. If they aren’t capable of articulating it in simple terms, their peers won’t understand it either. I feel it is important to open up to your very close friends. Who is classified as "a very close friend" is hard to know and it will take some trial and error to figure this out. It is all a part of growing up. But the earlier you do open up to very close friends, the better off you will be. It will allow you to start building up an alliance of people who can support you. Out on the playground, when you run into a bully who makes fun of your diapers, you will need those good friends to step in and help defend you. It saved my skin more than once having a group of friends to help shield me from bullies. The good thing about bladder exstrophy is because it isn’t visible, those friends who you tell about it will probably give it a few minutes of thought and then ignore it and want to get back to playing. So once you realize that you want to tell someone about your or your child’s condition, how do you go about doing it? The first thing to think about is the setting. It should always be in private. That is pretty easy and logical when you talk about telling other adults. But when telling friends, it is good that you do not do it at school even if you find a quiet place on the playground. If other kids are around, your friend may be thinking about it right afterwards and just start talking about it to others without thinking. The second thing to think of is tone. Roughly 93% of communication is non-verbal. So your tone matters. It should be serious but not too intense. You want the other person to understand that this is important to you but you don’t want them to think they need to change how they act around you. Once you have the right setting and tone, the next thing is to figure out what to say. I feel that keeping it simple is best, this is true for telling a 4-year-old or a 44-year-old. I said pretty much the same thing from the ages of 5 to 25. I have a birth defect and my bladder has some problems. That means I leak and I have to wear diapers. Then I usually like to say that I don’t want others to know so I would appreciate it if they didn’t tell anyone. Finally, I would finish up on an upbeat note, saying that it doesn’t change anything about our friendship, etc. and I can still do everything that anyone else can do. If they ask more questions about it, then you can decide how much more they should know. It just depends on who it is and what they need to know. You should try to keep it simple and don’t share any details that aren’t necessary. Well that is my rough guide for how to tell others about bladder exstrophy. There are a lot of grey areas. Personally, I am a pretty open person so I tend to be on the side of being more open with people, but I am also 28 years old. When I was young, and others were less understanding, I was a lot more closed up. I think it is best to start very private then slowly become more open as you get older. I didn’t truly open up till college. You just need to realize that you can only be as open as other people are mature. The less mature they are, the less open you should be with them. Jimmy Simons
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