I don’t really want to tell people because it is kind of personal. My mom told my friend’s mom and my friend when we were outside talking…my friend and I don’t really talk about it but sometimes my mom and her mom talk. I’m comfortable with that – she’s like my crazy aunt.
Gabriella, age 12
I would be okay with explaining it
I still think it’s embarrassing and I wouldn’t be telling people. And I don’t really like to talk about it unless I have to. So just to say, “Yeah, I do this,” I don’t think I would be doing that. But if I am close to that person and they, like, saw a catheter in my bag, I would be okay with explaining it… I have different groups of friends, so I tend to go out with the group who won’t be asking, “How are you feeling? How are you doing? How was your stomach last week?” – that kind of stuff. But then the person I’ve known longer, we go out and it’s like I’m a normal teenager, nothing is different about me, unless I need to vent about it. So if I need to talk to her about it, I can, but if I don’t want to, it’s ignored.
Jenna, age 16
You have to rip the band aid off
I think in eighth grade I started to tell my friends. Well, in sixth grade I had a best friend who I told, and I just told her everything. And it’s kind of like the old saying, you have to rip the band-aid off. If I was telling my friends little bits of information, like, “Oh, I have to go to the doctors…” “For what?” “Oh, nothing, nothing…” Like, if I brushed it off and was just kind of tiptoeing around the subject of it, they were more likely to talk about it among themselves: “What’s wrong with her? Why does she always have to go to the bathroom? Why does she…?” But I told my one friend, “Listen, this is what I have,” and she was like, “Oh. Why didn’t you just tell me?” So once I did it, it was perfectly fine. So kind of just telling her, telling this one friend everything and seeing how she reacted, made me much more comfortable being more explicit with my friends about what’s going on. And now I tell my friends everything, even my guy friends. I don’t necessarily tell them that I have to cath, you know, X number of times, but I tell them I have a urinary problem. And they’re not like, “Ew, that’s disgusting.” They just say, “Oh, I’m sorry. That stinks!”
Elizabeth, age 16
Good, good friends
I think I started telling friends about cathing in middle school. But I felt like it wasn’t working out in middle school. I didn’t have real good, good friends. Now I have real good, good friends and all of them know…I say I can’t empty my bladder by myself so I have to cath every four hours to empty all the urine out. That’s about it… I think the very first time I ever tried to tell someone was in elementary school, and that was just really scary because I always felt like I was going to get teased or something, or somebody would think it’s so weird that I have to do that, because I thought it was weird myself…No one reacted that way except my cousin’s brother, but by that time I just laughed! The way he reacted was funny to me, because I didn’t think cathing was that extreme. I was just comfortable with him, so it didn’t matter.
Isaiah, age 17
As long as they’re truly your friends
If you tell people about your problem, like the cathing, and the Mitrofanoff if you get it… if you tell people, as long as they’re truly your friends, they’ll understand. They might even think that it’s cool! … There was big one challenge, which all goes back to I hiding it, hiding the whole problem itself. And because of it I tend to not talk to people that much. I’m very self-conscious about it. I only tell people about my cathing if I really trust them. Or if they’re a doctor or something.
Matthew, age 19
But I take care of it pretty independently.
Johanna, age 22
They took it very well
I have two close friends, and I told them about cathing, so just for me to be able to tell people, that’s what made me feel better…They knew I was going to the doctor’s and they knew I had something wrong with me, so I just told them the result.
I was like, “Oh, I have to catheterize myself.” And then one of my friends didn’t know what it was, so I had to explain what a catheter was, and one of them already knew. I told them that it was this little tube, it’s really tiny, and you stick it up your urethra, which is the hole that you pee out of it. And you stick it up and it goes into your bladder, and then it just drains out your urine, and then you just take it out, and that’s it.
One of them, the one that didn’t know what the catheter was, you could see it on her face that she was a little disturbed! But the other one was like, “Aww, you poor thing!” One of my friends made me a card and she bought me a chocolate, saying get well and all that stuff. So they took it very well.
Alexa, age 16
I haven’t really thought about sharing it
My aide knows and the nurses do and I think my teacher might know.
I don’t think any of my friends know…I haven’t really thought about sharing it.
Siobhan, age 9
It doesn’t really matter
It was a challenge. I was kind of debating whether I should tell my two best friends or not. And one of my friends already knew because his mom told him, so I was really debating telling my other friend. I ended up just telling.
They didn’t react like anything bad or anything. We don’t talk about it at all. We kind of forgot about that night. It doesn’t really matter!
Henry, age 12
A little bit more comfortable
I’ve told a few of my closer friends. Some of them asked and some of them I just told…I told them about how I have a medical problem and they asked me what it was.
I felt comfortable with it. All of them understood me, said “Oh,” and stuff, like it was no big deal. It felt a little bit more comfortable having them know.
Ethan, age 13
I have to really trust a person
Sometimes friends don’t really understand why I have to go to the doctor’s. And some parts of me are like, “Just tell them!” But then I’m like, ehh…you know?
I only have a couple friends who know about cathing. I have to really trust a person because it’s just too personal for me. I have a couple friends and I don’t mind it, I’m getting more open about it, but I have to be very careful who I tell.
Kayla, age 14
Kayla, age 14
I wasn’t too afraid to let people know
A lot of people actually know. After I had the surgery I wasn’t too afraid to let people know. I started mostly with just my best friends…A lot of them came to visit me for the surgery, so I just kind of told them. I showed them the stoma and everything. Some of them were surprised – some of them had no clue what it was. For the most part they didn’t seem fazed. I mean, at first they thought it was kind of weird and stuff, but now they’re used to it.
Dylan, age 16
Now you have a teammate with you
I always thought bathroom needs were a private thing. I don’t think normal people talk about their bathroom needs with other people. But times like in college, where you go to parties and there’s seven people waiting for the bathroom – and at least with my bladder, it goes from not having to cath to really having to cath – having those few friends that you did tell is helpful, because they’ll help you find ways. You tell your buddy, “If I don’t go to the bathroom, my bladder explodes.” They don’t want it to explode either.
So sharing that definitely was harder, but you start off with your roommates. They’re not going to reject you, they’re living with you for a reason. And then you pick and choose from there who you want to tell. I told girlfriends and stuff like that, and it really makes you feel better with them, because now you have a teammate with you. There’s no secrets. I suppose no secrets in any relationship is good, especially with family and friends.
Sam, age 32