My teacher tells me it’s time, or I usually tell her it’s time to…I just go up to her and she either says it or I remind her.
Once we were going to play a game in class, but I had to go down to the nurse’s to cath, and then I missed it…. I just say that I need to take medicine. Just the teachers that I have and the nurse know that I cath. I don’t really want to tell my friends.
Eric, age 8
Missing most of that class
In school it can be difficult, because I don’t want to miss class, but I kind of have to. I go once in the morning and once in the afternoon. I usually go around 9:30, which is my English class, which has been very difficult because I am missing most of that class. I have to have a snack because of the mitochondrial disease and my GI issues, and then I do the cath. So I’m doing a couple of things.
I have friend in that class who I’m getting copies of notes from, and I try to get work before class. So I’ll go and I’ll get the work before I miss it. My teachers understand that it needs to be done. They would rather me be in class, but I would rather that too. I tried to see if I could switch the time of my class but it just wasn’t really an option… I go downstairs to the nurse to cath, and I think most people know I go, but they don’t know why. The teachers don’t know why: they know I have to do a procedure. That’s what I decided to tell them and what the nurse told them.
Jenna, age 16
Do what I need to do
The school day was 8:15 to 2:15, and my mom would come during my lunch time and take me upstairs to go to the bathroom. She had to make sure that I would go to the bathroom because she knew that I was too embarrassed to ask because I had to use a separate facility. So she would have to come and help me with going to the bathroom. So it was kind of rough seeing my mom every day. I mean, I see her every day now, but I mean in school! So that was kind of frustrating, but as time went on, I was able to just kind of handle it. I guess my medical condition and having to receive slight special treatment, I guess you could call it, has made me more independent in the sense that I’ve been forced to do more things – more things and also just more uncomfortable things – than most of my friends have. So again, forcing me to just kind of go off by myself, do what I need to do.
Elizabeth, age 16
I felt like many teachers would want to embarrass me for asking to go to the bathroom. They were just like, “Why do you need to go to the bathroom? You always ask at the same time,” and blah blah blah. This was before I really wanted to tell anyone about catheterizing.
I had this teacher that if she saw me have a drink – I wouldn’t even be drinking it, I would have it under the table or something – she would grab it and just throw it away.
And I was supposed to keep up with my fluids, just drink.
Isaiah, age 17
I cared what the other students thought
Matthew: The teachers understood the situation, and I even got a special pass to go to the nurse’s office. I’d flash the pass and I’d just go. But I often didn’t use it, because I didn’t care what the teachers thought, I cared what the other students thought.
Dad: But in high school he would go to cath in the nurse’s office, and she wasn’t there! The door was locked!
Matthew: Yeah, sometimes I actually had to go to the main office so that they would call the nurse on the walkie-talkie just to get her in the office!
Matthew, age 19
I didn’t want the nurse telling him too much
I missed a little bit of English because I would go at 11, which was sort of before lunch. I’d miss a little bit, but my teacher knew what I was doing, so he’d fill me in after on what I missed. But it wasn’t really that much, because it’d only take me like fifteen minutes. It eventually only took me maybe like seven minutes once I got the hang of it.
I chose to tell my teacher myself because I didn’t want the nurse telling him too much. I only told him a little bit. I was like, “I need to go to the nurse, and I need to do it every day at this time. I have a bladder problem.” He didn’t really need to know that I had to catheterize myself and all that. I was afraid that the nurse was going to just tell him that! … I had two rooms I could choose from. There was the bathroom, and they had these little drawers which you could put your catheter in. I found out that there were other people in my school that catheterize themselves, because the nurses showed me the drawers that they had for their catheters! And then they had this other room, it was a big room and it had this bed in it. So I chose that room, because I could use the mirror on the bed so I could see myself. And they had a sink in there so I could wash up and lay everything out, so I thought that was better.
Alexa, age 16
They don’t really need to know my business
Some girls in my class would always talk whenever I came back in, and they were the people that – you know, they talk very loud and they don’t think that you can hear them, and they always say, “Oh, why does she keep leaving every day at the same time?” Blah blah blah. But you know, I ignored it, because to me, they’re just a bunch of busybodies, and they don’t really need to know my business.
Alexa, age 16
Catheterizing at college
It was a good two months catheterizing in a public bathroom, which I didn’t really like in the first place. So I would try to pick these hours where no one would really be in there but that never really worked…
It was annoying. It’s not really what I wanted to do but I had to. I told my roommate about it because obviously I had equipment for it that I was unpacking. She was like, “Oh, that’s so weird,” and whatever, but she accepted the fact, and I just said that “I would appreciate it if you didn’t tell anyone about it,” and she didn’t, so it was fine.
She thought I was, like, sick, but I was like, “No, it’s just going to help my bladder.” And she was like, “Oh, well, good. That’s good!” So yeah. At first it was probably awkward for her, but it was fine after that.
Val, age 19
Why were you going with the nurse?
It’s not a big deal because kids see me going with the nurse and they think, “Oh, she’s probably scratched herself or something.”
I remember the time that our teacher caught one of the kids in my class, the kid was saying, “Why were you going with the nurse?” And I was like, slowww…and all of a sudden the teacher’s like, “Oh!” and she quickly says, “Okay, let’s start reading. TJ, you go first!” That’s what she said. It was so close there!
Ellie, age 8
I said I was using asthma medicine
At school I went twice a day, saying I was using asthma medicine. My teachers, principal, and other school staff knew that I cathed, but no friends. It didn’t really bother me that the school staff knew because I knew they were helping.
Ryan, age 11
I kept my supplies in a bag that I kept with the nurse in a closet. So when I went down to the nurse I would say hi and just grab the bag, and I’d go to the bathroom right there and cath. No one really knew.
Henry, age 12
Fitting it in
Henry: We have something called Home Base, which is on Tuesdays, Wednesdays, and Thursdays. It’s right in between fourth period and fifth period, and my lunch is fifth period, so on those days I go right at the end of Home Base. I just go to the nurse, and really it’s the middle of the day. And on Mondays and Fridays I miss the last five minutes of social studies, which is fourth period. Sometimes I don’t really want to leave because we’re learning something important, but I have to leave.
Mom: I think he ends up missing some work, which is not a good thing, when he leaves the room.
Henry: Just a little bit. We usually have notebooks and stuff for that night’s homework, so I learn it over the homework.
Henry, age 12, and mother
Where all my supplies are
Usually I cath just before lunch and then before I do any after school activities. I cath at the nurse’s office because that’s where all my supplies are and stuff.
I’m fine just having all my stuff there. I kind of feel more comfortable having my supplies there and not having to carry it around with me all day at school.
Ethan, age 13
It just hasn’t really bothered me
I just walk into the nurse’s office and say hi and I go. I really don’t want to miss lots of my classes so I try to go fast. I just go, say “Hi,” and “I’ll see you guys later, bye.”
I talked to my chorus teacher because that’s the only time I can go, right before chorus. I just said, “I have to go to the nurse’s office at this period every day,” and she said, “Okay, just go!” And I said okay.
When I first started doing it, my mom came to school. When I was in third, maybe second grade, she would come just in case I had any trouble. As I got older it just hasn’t really bothered me.
Kayla, age 14
None of my friends have a clue
Mom: There are like seven nurses that work in the nursing department. Public schools are lucky to have one nurse! And all the supplies are there, and the bathrooms are big, and there’s a drawer that he just has his own stuff in. Well, it used to be like that, when he needed to flush and everything. Now that he’s so independent, he goes to the bathroom upstairs on the floor and in the backpack brings his stuff, so he doesn’t really have to go to medical!
Alex: No, only once in a while, I’ll still go if I forgot to bring bags. And they welcome me there – they’re like, “Hi, Alex!” But basically, none of my friends in school have a clue.
Alex, age 17, and mother
People are understanding if you’re honest with them
High school, when cathing was new to me, I stayed to that four hour schedule. So I think I set a watch to beep every four hours, and I probably made some lie up to tell my friends like, “Oh, it’s medicine,” or something like that. You can always find ways to make it sound a little bit better, instead of telling them, “I have to go urinate every four hours.”
Then in college, I didn’t care if it was two hours, or four hours or five hours, before any important thing, any class, I would go to the bathroom right before. I never wanted to leave class in the middle, so I’d always go right before. That’s how I dealt with that. I probably should have done that in high school too, but in high school you have these bells and stuff, and you have to get to class really quick. Sometimes I think I had some agreements with some teachers, like, “I have a urinary problem. Do you mind if I come in a little bit late on such and such?” People are understanding if you’re honest with them…The only ones that would give me trouble were if I never let them in on it, didn’t tell them what was going on, and I would just keep asking, “Can I go to the bathroom again?”
Sam, age 32