I was having a little leaking, so I would go cath after a shorter amount of time. Like if I had to do it every two hours, instead I would do it every hour and a half.
It still happens once in a while. It just feels weird.
Eric, age 8
Growing up with incontinence
It wasn’t really embarrassing; I kind of kept it hidden. It was more bedwetting and stuff like that, so it was easier to hide, but I definitely was embarrassed at sleepovers and avoided that type of stuff.
At home, it was kind of part of the daily routine. It was normal. It was something we always lived with, and if it happened everybody just went about their business. It really wasn’t out of the ordinary… Now I’m getting more infections and I have a kidney infection. They are talking about if the infections continue, they will have the nurses come back in and try to teach me [to cath more cleanly], but I don’t know.
Jenna, age 16
Easily avoidable
If I don’t stick to a routine for cathing, I have accidents. And also the bowel problem can be kind of rough too.
There’s been a lot of times where I will luckily be wearing either a pad or pull-ups or some sort of protection. Then I have an accident and my pants are a little wet, but I say that I sat in something or I just tie a sweatshirt around my waist; those are easily avoidable. And also with girls, if I’m wearing regular underwear and I don’t have a cath, I can just ask someone for a pad. I’m lucky to be a girl who has this problem, because wearing a pad is acceptable, whereas if I were a guy that would be a little uncomfortable.
Elizabeth, age 16
I think humor helps
I have had accidents on the urinary and bowel end. The bowel is much rougher, but I don’t know, I deal. And out of my group of friends, and out of my grade to be completely honest, I’m kind of known as the clown or the goofy person, which I like. But I definitely use humor as, I don’t want to say a defense mechanism, but a way of dealing with things. When I will have had an accident, sometimes I’ll make up a story and say that I sat in something and make up this goofy story and people will laugh and be like “Oh Lizzy, you’re crazy!” I mean, I find myself in a lot of embarrassing situations, whether it’s related to my medical condition or just goofy things that happen to me, and I’m very explicit in telling them. I tell everybody my embarrassing stories and they’re funny and I’m fine with that! So even if something embarrassing happened to me, because I’ve built up this reputation of being like a goofy person, they would just be like, “That would happen to you!” So I definitely think humor helps me in dealing with things that come up.
Elizabeth, age 16
I was already embarrassed!
Isaiah: I used to have to wear Pampers for so long, because I used to wet the bed.
Mom: He wasn’t getting up to cath in the middle of the night, so he wore pull-ups.
Interviewer: Did anyone give you a hard time about that?
Isaiah: My brother, and my sister, everybody. And my father!
Mom: Oh, it was everybody! Even his dad. It was all of them. They couldn’t understand. I kept saying, “It’s not like he could control it, it’s just leaking!”
Isaiah: And that was when I really couldn’t control it. But I learned how to control it, it just took me longer. And my father used to tell my niece, and that used to embarrass me worse, because I didn’t want anybody to really know I wore Pampers. Because I was already embarrassed! I already understood that at my age nobody else was wearing Pampers, most likely.
Isaiah, age 17, and mother
Johanna, age 22
Long jackets
Actually, the reason I’d wear long jackets like this was to hide any accidents that might have happened from either not being able to cath because of the nurse not being there, or not cathing because of just not wanting to…Even with this jacket, I waited until everyone was gone and then I bolted out the door, just ran right to dad’s car.
Matthew, age 19
Accidents
I still have accidents, about once a day. It happens during the daytime, mostly when I come home from school. I wear actually sometimes a Good-Night, and sometimes I wear liners. And the teachers know, so when I go, I can ask them, and then I go and change.
Jaya, age 8
I smelt something weird
There was this one day at school, we were just about to start language arts class, and I smelt something really weird. And then I touched my shorts and they were wet.
Then I just went to the nurse – I was a little bit embarrassed!
Accidents don’t happen very often. It’s not really on my mind until it happens.
Siobhan, age 9
Finding out I had an accident
Well, I smelled. It was kind of hard because some people just made fun of me! They would just kind of call me names and stuff, but nobody really does that anymore at middle school.
Henry, age 12
Ethan, age 13
Better over the years
Over the years I’ve had more feeling that I have to go, so it’s been getting better. And if I drink a lot of caffeinated stuff or a lot of water on a hot day, I’ll go more frequently, or I’ll have spasms and leak, but I can definitely tell when it’s happening. When I was younger, I didn’t have a lot of feeling but I think it’s gotten better over the years.
I always carry a sweatshirt with me at school so if I leak, I just wrap it around me, and I do have a change of clothes at school. But I usually can tell if I am going to have that type of day, if I am spasming a lot the night before, or I just know. Then I’ll take an Ibuprofen and it helps a little. It’s annoying sometimes but I know I’m just going to have to live with it.
Kayla, age 14
All eyes on you
I remember we used to have a counter, one counter in the house, and that would be the changing spot. And I remember it was hard, because family would be there, and when it was time to change me, it just was in the middle of everyone. I remember I’d have an accident, and my dad would change me right there, and it was a little bit hard. All eyes are on you.
Alex, age 17
A comfort thing
Alex: To me, protective padding is sort of a comfort thing, I choose to have it. And sometimes, you can be in the car and forget to go. So for me it’s like security.
Mom: That’ll eventually go…hopefully this summer we’ll try again. Because if you ask him, when was the last time you had an accident during the day, it’s been a long time!
Alex, age 17, and mother