My little brother knows about it, sadly. Once my mom and I were talking, and my brother was looking around in the bathroom and he found the catheters. And then he was telling all his friends that I had to use a tube to go to the bathroom! It really wasn’t okay! I told my mom about it and nothing really changed…And then one of his friends walked up to me and he’s like, “You have to use a tube to go to the bathroom?” and I’m like, “No!” I tried to deny it, because it’s a fifth grade boy, and they’re a year younger than me but still!
Gabriella, age 12
I feel like my privacy is being exploited
I was born with cloacal anomaly. I brought to Children’s the day I was born. And I could be getting this wrong, but I think it was right away they gave me a colostomy. For the longest time I had that, and then I had reconstructive surgery – they just had to reconstruct everything inside of me. I’ve had kidney problems, bladder problems, GI problems, all sorts of things like that…And the urinary problem is the most pressing because it’s just every day, you know? It’s not like – I’m trying to think of an example – I also have a wrist problem, actually, but it’s not like I wet my pants because of my wrist problem!
The urinary problem is a lot more embarrassing, and it’s frustrating having a medical condition regarding that, because what you do in the bathroom is a very private matter, and when it’s such a big part of your life, having to come to the hospital all the time for urinary problems or bowel problems…I kind of feel like my privacy is being exploited sometimes… When I’m at school – or when I’m out of school, I should say – and I come back, I usually just say, “Oh, I had a doctor’s appointment.” And sometimes my friends ask me what. Not so much anymore, I’m much more confident now and comfortable talking about it, but I used to just say, “My wrist problem.” Because I did, I had surgery on it, but that is my smaller problem.
Elizabeth, age 16
It’s set on vibrate for a reason!
Mom: Her watch would buzz and her teacher would have the rest of the class reminding
Meghan that it was time to go to the bathroom. Like, we have it set on vibrate for a reason, woman!
Interviewer: Was that embarrassing, Meghan?
Meghan: You guessed it! More than you could think so.
Meghan, age 8
I don’t want him spreading the word
Meghan: I kind of want to talk to my brother. If my brother got a friend to keep him occupied, over at someone else’s house, I don’t want him spreading the word either. I’m kind of worried about that, like he could spread the word to a friend!
Mom: You could talk to him about it.
Meghan: I think he already can keep it private…
Mom: Yes, because we told it about when you started and he never told anybody.
Meghan, age 8
I didn’t want the whole cast to know
Alexa: I was in a Christmas show, and I had to catheterize myself in a regular bathroom. Me and my mom, we went into the stall together…because I didn’t want to lay it out on the floor, and obviously I can’t lay it out on the sink, so she held it while I put the lubricant on it and all that, and then I catheterized myself.
Mom: But you wanted to make sure there was no one in there, so we had to wait for everybody to leave!
Alexa: Oh yeah, I had to wait! Because I just didn’t want the whole cast to know that I had to do something…because me and my mom obviously had to go into the same stall, and I didn’t want them to be like, “Oh, why is her mother going into the stall with her?” So we’d wait until everyone was out of the bathroom.
Alexa, age 16, and mother
Spilling the beans
My brother spilled the beans a couple times. Once when some people were over for dinner, I had to do the cathing, and I said I would be right back. My brother noticed that I was going upstairs where I usually keep my cathing stuff, and he was like, “She’s just going to go do tubing,” or something. And when they first heard that, they thought it was like the sledding kind of tubing! The little one Joseph was like, “I wanna go tubing with her, I wanna go sledding, I wanna go sledding! Me me me me me!” I’m glad that’s what he thought! … Of course Olivia knows…She knows somehow and I know I didn’t tell her! When I first figured it out I was a little bothered. She was like, “Are you doing to do the tube?” And I was about to walk over and I just froze, and I was like, “How do you know about that?” She never really told me. I was really annoyed. I’m like, “How would she know that?” And then I just assumed it was her mom since she was a doctor and everything.
We don’t talk about it. Well, she almost said it to my friend, when I was having one of my birthdays, I remember. I was like, “Shh!” She was about to say it! She started and was like, “Aren’t you going to do your ca-” and I’m like, “Shh!” So she said, “Aren’t you going to serve the cake yet?”
Ellie, age 8
An object from space
Ellie: The SpeediCath is much easier for me. If it falls out of my pocket or something, with the old stuff, people would know what it is right away. Now, they would probably not even know. It’s some strange object from space!
Dad: Well, that’s right. One fell out of your pocket and someone said, “What’s that?” and what did you say?
Ellie: Medical equipment. But I badly wanted to say an object from space. I badly wanted to say I found it on Mars! The problem is, the words on it would give it away, the company.
Dad: Saying it’s medical equipment is better than saying, “Oh, it’s a pen,” because then they’ll want to see how it works.
Ellie: And they’ll want to see if it’s from Mars!
Ellie, age 8, and father
Ryan, age 11
It’s a private thing
You’re sticking a straw in your stomach*, yeah, so I’m sure embarrassment does play a role. But it’s not like there’s seven people lined up and you’re the guy putting an instrument into your bladder: you’re going into the stall. Someone asks you what you’re doing in the stall: “It’s none of your business.” “I’m taking medicine.” I mean, there’s easy white lies to get out of all these problems. You don’t have to tell every stranger that you’re catheterizing, and you don’t have to be out in a urinal so they see it. So actually I don’t think I’ve been in situations where I’ve had to be embarrassed. It’s a private thing.
Sam, age 32
* Editor’s note: Sam catheterizes through a stoma in his belly button.