Experience Journal: Self-cathing around friends and at school

self-cathing-experience-journalClean intermittent catheterization (CIC), sometimes called self-cathing, involves emptying the bladder using a thin tube called a catheter when children and adolescents are unable to empty their bladders completely on their own. Some of the reasons children and adolescents might need to self-catheterize are if they were born with abnormal anatomy, had an infection that affected their bladder function or suffered damage to the nerves connecting the bladder to the spinal cord and then to the brain.
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The Boston Children’s Hospital Department of Urology and the Department of Psychiatry created the Self-Cathing Experience Journal. This journal includes stories from children, young adults and parents who represent the collective wisdom of families who have experience with self-cathing. Here are some of their stories, in their own words.

On deciding how to tell friends…

At one of my check-ups, we met this other kid who lives near us and was thinking about using catheters. He wasn’t really sure, so since I was already using them, I said that I’d talk about it with him. I told him it doesn’t hurt at all, and it’s easy and that you should because it helps. A few months later we got together again, and it turned out he was using catheters and was OK with them. I’m happy that it worked, and I kind of liked talking to somebody else who has the same issue as me!

Henry, age 12

I sound very, very cliché, but I know that I have something to deal with and have to accept it, and because of this challenge, I think I’m more mature. 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

I always thought bathroom needs were a private thing. I don’t think normal people talk about their bathroom needs with other people. But there are times, like in college, where you go to parties and there are seven people waiting for the bathroom. At least with my bladder, it goes from not having to cath to really having to cath, and having those few friends that you did tell is helpful. You tell your buddy, “If I don’t go to the bathroom, my bladder explodes.” They don’t want it to explode either.

Anonymous

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 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 are no secrets. I suppose no secrets in any relationship is good, especially with family and friends.

Sam, age 32

On self-cathing at school

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 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!

Alexa, age 16

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 I was too embarrassed to ask because I had to use a separate facility. So that was kind of frustrating, but as time went on, I was able to handle it.

Elizabeth, age 16

[On using a public bathroom] I would try to pick these hours where no one would really be in [the public restroom] 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, “I would appreciate it if you didn’t tell anyone about it,” and she didn’t, so it was fine.

Val, age 19

To learn more about self-cathing, check out our research and visit the Experience Journals.