Sometimes I want to go to my friend’s house but I can’t because I probably would forget to cath. My advice is prove that you can do it on time so then maybe your parents will let you.
Eric, age 8
Don’t let the medical condition hold you back
I guess honestly the biggest thing for people with urinary problems is the social thing. It is hard, it’s really, really hard, and you just have to realize, the less confident you are, the more noticeable your flaws or differences will be. If I was a really inhibited person and really, really shy, then maybe somebody would start to question – why is she out all of the time? Why does she have to go to the bathroom so much? But because I’m a very loud, outgoing person, I feel like I’ve established myself as approachable and they think of me as, “Oh, there’s Lizzy, the girl who’s in the play!” – not, “Oh, there’s Lizzy, the girl who’s always at the doctor.” So as long as you’re involved in other things and you don’t let the medical condition hold you back, then I don’t think anybody will have social problems.
Elizabeth, age 16
It hasn’t been a huge deal
I’m 22, so I go out and stuff, and I mean, it’s been okay. It hasn’t been a huge deal. I think it takes me a little bit longer to use the bathroom, probably two minutes longer than it does most people, so I think sometimes somebody is like, “Come on, hurry up, what’s taking so long?” but it really hasn’t been that big of a deal.
Johanna, age 22
In the summer I can’t do sleep-away camps. And I used to, I did Boy Scouts, and every month we would go camping. I couldn’t do that. I kind of made up my mind to quit that, because in order to rank up in it you had to go on the campouts. So yeah, that was a disappointment…It took a while to make up my mind with that. Should I or should I not? Should I do it or should I not?
Henry, age 12
People can be really accepting
I think when you’re a kid growing up with spina bifida you think it will affect your relationships. Not so much with your parents…I know all families are different, but I grew up in a family where you are what you are, and your parents love you and you love them for their differences. Friends, I always thought that was going to be more tricky, and I think I put a lot more stress into that, probably more in friends than academics, because you want that acceptance. And I think I really fought hard at that, and maybe I didn’t need to, because I think people really can be accepting if you don’t give them the chance to not accept you.
I had a ton of friends in high school and college, and I definitely was the different one, but there’s always going to be a different one in the crowd – different religion, different color, different everything. I was the one who limped, and I think my friends always accepted me.
Sam, age 32