If you have the problem that I had when I was little, try going to the bathroom – don’t try to hold it off. Really, I’m serious, don’t hold it off at all! If you don’t feel like you need to go, try your best, I really recommend it. I had that same problem where I just couldn’t feel it. Try to go as soon as you can, no matter if it’s a little… It may be kind of nerve-wracking, but trust that it will work.
Meghan, age 8
I have to deal with something a lot bigger
My health has also affected the way that people think about me. It controls my life in a sense that I am limited in things that I do. But it affects the way that I think about myself in the sense that I know I have something to deal with – and I sound very, very cliché, but I know that I have something to deal with and I have to accept it, and because of this challenge, I think I’m more mature in that I don’t care about petty problems that my friends are having and I don’t care about silly useless things that are going on. I have to deal with something a lot bigger.
And I know everybody will have something that they have to deal with in their life, but because I was presented with something the day I was born…I feel like a lot of my friends kind of take things for granted whereas I will appreciate them.
Elizabeth, age 16
It’s not your fault
Advice for somebody who has urinary problems or bowel problem or any medical condition that is related to those systems – I just think you can’t let yourself be embarrassed, because it’s not your fault. And I let that hold me back from doing certain things when I was in elementary and the beginning of middle school, and I found that once I was honest with my friends, they didn’t care. You’re going to be afraid to tell your friends that you sometimes have accidents, but once you tell them, they really won’t judge you. They in fact will probably respect you more for being able to deal with it. For somebody who hasn’t experienced having an accident in public and being able to cover it up, they will be amazed that you were able to do that! It’s not like they’ll be like, “Ahh, you can’t control your bladder! I’m not going to be your friend anymore.” Nobody would be that terrible, because it’s not something you have control over. It’s a lot easier said than done, but it’s a matter of accepting what cards you were dealt.
Elizabeth, age 16
The upside of health problems
I feel like I am more mature, and I know myself better. I’m able to say, like, “I know how I feel, and I know when there is something the matter, rather than, this is nothing, I just need to wait it out.”
And it’s probably made me more determined to get stuff done, and I’m more persistent, because when I’m feeling good I’m very determined to get done what I need to get done, because I might not be able to in a week.
Jenna, age 16
They shouldn’t be nervous because it won’t hurt them. But they’re still going to have to do it every day.
Naomi, age 10
It’s really not a big deal
Don’t be afraid. I mean, I’ve been through it, so I know what it’s like. At first it’s a little scary, but it gets a lot better. And you’re going to be so proud of yourself once you do that the first time and you did it by yourself! I mean, I was really proud of myself.
And it’s not that bad. It’s only maybe a couple times a day. And for some people it might be temporary, for some people, they’re always going to have to do it, but it’s not really a big deal, it’s just something you’ve got to deal with.
Alexa, age 16
It takes time
Don’t get really frustrated, because it takes time to learn to do the catheter, to deal with all this stuff.
Jaya, age 8
Go with a good feeling
Take a deep breath and go to the bathroom with a good feeling. If I felt negative, it probably wouldn’t work… I would tell other kids don’t worry, just do it and get it over with. Just go with the flow.
Siobhan, age 9
Positive thoughts
Don’t feel scared about it, it doesn’t hurt at all. What else – it might get better, so you should look forward to that. You shouldn’t think about it if it doesn’t get better, you should think that it might get better. Positive thoughts! … Don’t worry, it might get better. Do it your own way, like, do it whenever it’s most comfortable and stuff. If you don’t like when you’re doing one, you should kind of change your schedule, maybe.
Henry, age 12
Ethan, age 13
Go with what you have
I kind of knew that I had health problems from the beginning, but my family has been really positive, saying that the best people are in Boston, there’s nothing else you can do, and you just have to go with what you have right now… Once you start, it’s going to be difficult, but if you do it on your own you have so much independence. It’s just so much easier and you can do anything really, nothing really stops you. You’re so independent – you can just go to a friend’s house and just have a bag. You know, it’s just easy!
Kayla, age 14
How many days can you say “Why me?”
I don’t know how many days you can say “Why me?” The why me?’s only last a small period of time before you say, “All right, I’ve got to man up and just do this now, and it’s part of my life.” I think it was pretty quick with me, the feeling comfortable. You do something for a finite amount of times before it becomes common nature…. What are you supposed to think? How are you supposed to deal – like, give up? Throw your hands up and say I don’t want to deal with this anymore? You can’t. I can’t just say I don’t want to cath anymore. So it’s just part of your life and you accept it and you move on. I think that’s what works best for me.
I’m trying to think of other ways that I’ve dealt with it in the past. I don’t like dwelling on how things aren’t working out or aren’t right, because I think that brings you deeper and deeper into a hole. You need to fight out of it. Having a good relationship with a doctor certainly helps, having a good relationship with your family definitely helps, being honest with your friends definitely helps, because now you have the support system around you.
Sam, age 32
The payoff is that you’re healthier
I’ve known people that have catheterized – it always gets them at a time in their life when they’re immature. Well, you have to grow up. It’s a responsibility. It’s your first major job. You don’t get paid for it; the payoff is that you’re healthier. So when the doctor tells you do it every four hours, do it every four hours. If the doctors tell you to use the wipes and the lubricant, do it. Do it for awhile until you find out what you don’t need, or you find a way of doing things on your own. That’s very important, and I think kids try to rebel. I probably did at one point too, and you’re only going to mess yourself up a little bit more. Doctors are trying to help you. I learned that at a young age: you don’t go into the doctor’s for them to make your life miserable.
I’m pretty sure that when they figured out catheterization, it wasn’t the long cut to make things better, it was the best possible way. So I guess my advice would be to listen to your doctors, drink lots of water, that’s important, and have a positive outlook.
Sam, age 32